Chemotherapy, PEG feeding and a million other questions .....

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tender Face, Jun 4, 2008.

  1. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Have come away from hospital with what I see as a rather bizarre* proposal to attempt chemotherapy for mum. Two years I was told her general health/frailty meant she would not withstand any treatment if a cancer was found ..... The 'current thinking' following latest tests is that a stent will not improve her swallowing and the only way to achieve this is to shrink the tumour around her larynx with chemo ....However, she is clearly too frail to withstand chemotherapy so PEG feeding is suddenly back on the agenda ...... Idea is to insert PEG and then get her home (how ill does anyone have to be to stay in hospital these days?). On the one hand I'm delighted to think we might manage a return home .... delighted too that there seems to be some hope for some improvement (although I was gently warned they are not talking complete cure, of course). This was all from a 'medical doctor' and I will be meeting with the Upper GI specialists on Friday/Monday to look at pros/cons of the proposals and give consent or not.

    *Bizarre because I thought PEG feeding would simply sustain weight or perhaps slightly improve it - anyone have any experience of people actually putting a serious amount of weight on?

    My cynicism tells me that the hospital are just dangling a carrot in an attempt to give us hope and there is no realistic chance of the chemo going ahead .... but if it did - how would such a confused person manage with the likely side effects?

    The chemo (if we go ahead) would take place in a specialist hospital (yet another change of environment and associated confusion for mum) ... once the PEG is inserted (if we go ahead) mum would be discharged from the fabulous ward she is now on and would only return to a medical ward for specialist treatment for her cancer ..... but the cancer isn't only in her larynx?

    I obviously want to give mum the 'best shot' - but I felt today that her needs are being assessed only from a physical point of view ... what effects these 'procedures' may have on her dementia??? How much pain for how little gain? It's that damned if you do, damned if you don't ..... I just don't want her to go thru anything unecessarily which might actually reduce her quality of life - but how to deny any chance of improving it? ... I never was good at gambling ... Mum barely understood a word the doc was saying at the meeting and just kept looking to me and saying 'Whatever you think is best' .... Trouble is I don't know what to think ........ If I was deciding for me in the same situation, I know I would refuse any further intervention for myself - but I'm not choosing for me ....... and I'm not sure I could suggest we refuse to consent to the proposals ..... (the doc said it would be mum's consent in consultation with me - but clearly mum will just go along with whatever I say) .......

    If anyone has any thoughts ... and don't hesitate to be blunt! (I was actually bracing myself for far worse news today) ..... gratefully received - will help me with the next meeting and all the questions I need to ask,

    Sorry to go on so much and think out loud - head's in bits ...:eek:

    Karen, x
     
  2. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Oh, Karen, my heart goes out to you. What a decision to have to face! Knowing my mother as well as I do and having gone thru her mothers chemo and radiation with her. I know that if circumstances were in my ball court mom would not have wanted either. She watched her mother lose weight, lose hair, loose appetite. Never mind that my mother also watched her own mother battle cancer on 5 different occasions. None the same type. With all that in mind it would be easier for me to say...No.
    Only because I knew her wishes.

    On the other hand mom had never talked of dimentia or AD so this stuff is new to me and I have to go based on her wishes if she got cancer...

    I don't think I could make a clear decision without all her dr.s involved at that point. I mean my question is .....what are the chances of chemo pushing her further down the dimentia route? Have they done this before? If there is no chance for cure and this is palliative just when exactly does it become palliative? I guess what I'm saying is they are putting so much on your plate now I just wonder if they realize the whole? I've worked with cancer patients and been on the end of having to draw numerous tubes of blood. I've seen them come in so sick they couldn't eat. (The PEG would be a blessing for them.) On one end I see your DR., who manages her dimentia, and on the other end I see her oncologist. Are they talking? Is her GP, the one who manages her dimentia, also the one who talked of possible chemo? If he is ask him to explain why he thinks this is an option. I think you know where I'm coming from.

    I know when I have a big decision to make for mom I've been known to take long walks and talk with "him". Not pray, just ask him to guide me in a conversation that will help me make that decision. I guess I talk to myself and mke sure I have 2 sides..:eek::rolleyes::eek:

    Karen, I hope that you are able to find some sort of way to work this out. Maybe another TP member has more input. I know I wasn't much help, but maybe just maybe I have said something that may trigger a memory of what your mother may have wanted.


    IN MY BLESSINGS


    &


    HUGS

    Nancy
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,142
    Toronto, Canada
    Karen,
    It does come down to you, doesn't it? What did your mother say about things like this when she was well? I know how my mother felt about using extreme measures to prolong life so it's easier for me.

    In your shoes, I would go for palliative care. I would not do anything that would cause physical or mental distress. But that's because I know what my mother thought - she was very outspoken about it. My sister's first pregnancy resulted in extremely premature twins - the little boy died 18 hours later and the little girl 2 1/2 days later. My mother said (to me only, thank God) that it was better they died, because there would have been multiple defects had they lived - blindness, mental retardation, plus much more. So I know how she thinks. She always said she didn't want to be on lift support.

    Question the doctors closely and then do what you think your mother would want and what would be best for her and you and your family.

    Love,
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Karen

    I'm not surprised your head's in bits. What an awful decision to have to make.

    I said no to a PEG for my mum, but she was 92, had had a massive stroke, and refused to eat, not couldn't.

    Your mum is much younger, and her situation is much more complicated.

    Yes, I think the PEG would put weight on and increase her physical stamina, they could ensure a high-calorie diet.

    But chemo can be very unpleasant for someone who understands -- how much worse for someone who doesn't know why she is being put through this?

    What percentage chance of remission of the cancer?

    How would chemo affect the progression of her dementia? (I don't think anyone would be able to answer this one).

    What support would be provided supposing all went well, and your mum did return home?

    And most importantly, would your mum want to go through all that, or would she want to let nature take its course.

    I knew the answer to that for my mum, but I guess it will be harder for you to decide.

    As you see, I'm giving you no answers. It has to be your decision, in consultation with all the experts.

    I don't envy you. It tore me apart, and it will be even worse for you.

    Just sending you hugs and much sympathy. You know I'll support you, whatever you decide.

    Love,
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Karen, I have some thoughts in no particular order.

    PEG feeding - the only reading I have done with regard to PEG and dementia patients are about those much further down the dementia road than your mother. People who not only can no longer swallow but who also can not metabolize the calories they receive. It's possible that that if PEG was used in your mother's case, it might be possible for her to gain weight. I'd want evidence in your place though.

    Chemo - well chemo comes in multiple flavours. I think Clay only took his anti-nausea drugs twice but he was on pretty low dose chemo. My concern would be with delivery systems. He refused point blank to have a port inserted, and fortunately his veins never collapsed so they were always able to insert the iv relatively easily. However, your mother is older and frailer. Having seen my own mothers hands and arms after 1 or 2 ivs and blood draws and don't think that would work for your mother. However, could she adequately care for a port or the alternative semi-permanent iv insert (whose name escapes me)?

    I'm afraid that oncologists on the whole take a no prisoners approach to cancer - it seems to go with the speciality. I would be more inclined to worry about controlling the symptoms. Have they given you any other options for debulking the tumour in her larynx? What about targeted radiation? I have no idea whether I am whistling in the wind here - I know its used for prostate and breast cancer but it might no be suitable for this location.

    I know this is going to sound fence sitting, but having said all that about the downside of chemo, I'm wondering what sort of death it will be if the tumour in the larynx remains interfering with her eating and speech I assume. So I'd be trying to get from them a clear idea of the progression should you not go the chemo route.

    Love
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,869
    Kent
    Dear Karen,

    I know what my decision would be but I really don`t want to influence you in any way.

    I am sorry the onus is on you, but you know your mother best. Even if you haven`t discussed this with her in the past, I `m sure you know what she would wish for herself.

    Take care.

    Love xx
     
  7. germain

    germain Registered User

    Jul 7, 2007
    342
    Karen,

    I'm so, so sorry - what terribly difficult decisions to have to make.


    The last time our Mum was in hospital (they couldn't be bothered to feed her) so suggested PEG feeding. We made our minds up about this when her geriatric consultant said
    " the only thing that PEG feeding will do at this stage of dementia is prolong her death "

    Not sure exactly what stage your Mum is at but I know what I would do if faced with this again.

    So, so sorry - its an awful dilemma and in the end I think you should go with your "gut" feeling. No one can really advise you on this at all but just share their experiences.

    Thinking of you
    Germain
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Karen, my heart goes out to you for even having to think about these things.

    I know what my decision would be, and I know what Lionel would want, but as has been said before, only you know mum's wishes.

    Sending you my warmest regards at this difficult time. Take care now.
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    You are all stars .... and I thank everyone for replying to what I know is a sensitive issue ..... I barely dare say the 'E' word - but I know if I were to try deny my mother any help offered that is exactly how I would feel ...... I now have questions 1-16 ready for next consultation (some with part A,B and C!;)) - so thank you all ...... After lots of discussion tonight with family/friends I am confident I may have found the right way forward to meet mum''s wishes without putting her through any further invasive or disorientating procedures ...... ........ (probably all pear-shaped by tomorrow:eek:) ..........

    I was sent these wise words from (geographically) distant family:

    I think the ethics of death comes down to an informed rational decision, and that means knowledge, especially of (a) the person approaching death and (b) the person with the most significant power of decision. It means too rationality, or sustainable under reason, and that is, I think, where ministers, mentors and sponsors earn their upkeep.

    To take the facts and proceed in a logical manner, and have a dis-interested third party examine the reasoning and declare it sound, gives the decision some large degree of sustainability.

    To cap it off we need to recognize that not all our decisions are correct; that throughout our lives we sometimes make decisions that we later regret. But that comes with the territory of being human.
     
  10. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    You have a very wise family member!


    HUGS

    Nancy
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #11 Skye, Jun 5, 2008
    Last edited: Jun 5, 2008
    Oh yes, I agree entirely.

    To pick up on your 'E' word, I've just been on a course on medical ethics. There are two kinds of euthanasia (with subgroups), active and passive.

    Active euthanasia is both unethical and illegal in this country.

    Passive euthanasia is ethical with the informed consent of the patient or PoA if the patient is not capable of giving informed consent. It is not ethical for the doctor to impose the decision.


    I think we'd all agree with that one. But we have to come to the decision that we hope will leave us with the fewest regrets.

    Good luck with your consultation, Karen.

    Love,
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    PS Just remembered an updated version of the Hippocratic oath a doctor friend gave me when my mum was ill:

    I found that strangely comforting.
     
  13. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    That's brilliant, Hazel, thanks. Think that sums up exactly where I've been coming from but not been able to articulate it properly - I really need convincing that any proposals are really worth any associated risks and going to give genuine benefit to mum (I know there are no guarantees) - and not just an exercise in the docs 'being seen to have done everything they possibly could' when it might be better for mum that they do nothing, or just part of what they are proposing ......

    Thanks again everyone.

    Love, Karen, x
     
  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    I have just had it confirmed to me that the oncologist had not been given the information about mum's Alz. :eek: What they are proposing seems to be based on a doc reading test results alone -- not a full knowledge of mum and her mental as well as physical health. :eek:

    There is a Case Conference for mum tomorrow ahead of my meeting with the team on Monday - I wonder if proposals may have changed again by then? :rolleyes:

    Sometimes I just despair at how we have to 'rattle cages' to get medics to talk to each other and take a holistic view! :(

    Love, Karen, x
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Oh for goodness sake Karen. I would be speechless except that sometimes, this lack of communication seems to be the norm rather than the exception.
     
  16. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Dear Karen,

    I too am speechless at this lack of communication...

    But try not to let that get in the way..for now..

    Of course it may change the whole way the oncologists view this..

    Ultimately it does sound as though the choice will be influenced by you...I don't envy you this...

    All I can say is that if my mum had AD..and was then diagnosed with cancer..I'd ask for palliative care.

    Sorry to be so blunt..can't see the point of putting her through the hell of ? surgery..? chemo...? radiotherapy..which is tough enough on it's own to deal with...

    To then face another hell of downhill with AD..which I suspect..(not research based...) would be worsened by any other trauma.

    Sorry to be so outspoken..hope I haven't offended..I've seen too much suffering over the last few years and this is purely my personal opinion...

    Love gigi xx
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland

    Karen, that is unbelievable! How on earth can the oncologist recommend a treatment without considering all aspects of your mum's health?

    You've been put through a night of agony, completely unnecessarily. I'm afraid words wouldn't fail me!:eek:

    Sorry, I replied to your PM before I read this update. My apologies if any of it was inappropriate.

    Love,
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #18 Margarita, Jun 5, 2008
    Last edited: Jun 5, 2008

    Tell The oncologist all the above go with what he says

    Its not only you Karen its the doctors specialist they can tell you what quality of life your mother going to have.

    They don't tell you directly , but they know I new really deep down . but being next of Kin they have to get your permission

    I only say this because I was in your shoes in 06 with my mother sister , not cancer but a massive stroke, so we I say we , because I don't like the thought that her life was only in my hands, so we gave her morphine to ease the pain as nature took its course .
     
  19. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Karen,

    I am so sorry you had to go through this with this being the whole beginning. I try to stay away from my advice and give straightforward advice because the difference in the 2 countries.

    The miscommunication happens quite a bit here in the US. Because of laws and because of the fact we are a pay as you go, only when an insurance company is involved here does this not seem to happen. I hope that they are able to give you better answers and that, given the circumstances, they have learned a valuable lesson. I just hope not at your expense.

    HUGS

    Nancy
     
  20. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Karen

    Been away so am trying in the odd few minutes here and there to catch up. What a time you are having of it (((((((((hugs)))))))))

    It is difficult when you have not been made aware by your Mum of her wishes beforehand. I was in a similar position.

    A few years back there was talk of getting tests done on Mum for bowel cancer. I had already seen the distress an emergency hospital admission had caused her and by now her dementia was far worse.

    I decided that tests would distress and embarass her if she could not understand the reason, that she was too frail to undergo treatment and the NH staff assured me that what quality of life she had would vanish as a result of major surgery/chemo/radiotherapy. The staff should ensure as far as possibile that she was pain free and her symptoms "managed". As it seemed later it was IBS (which is what I had more than half suspected anyway!)

    I also remembered my Dad, whom cancer got in its grip, saying to me how awful the treatment had made him feel, and that although it had extended his life he was having no more, as there was no point in life extension without quality.

    For me, seeing Mum even undergo tests, at the stage of dementia she was at, would, I felt, have been an unecessary torture for her, particularly as in her case, there was no way she could have withstood treatment and maintained what little cognitive function she had in life by that stage.

    That is just my story, for the point in time that my Mum was at.

    I do not envy you having to make these decisions..and it reminds me that I should really draft an advnace directive for myself to save this falling to my husband or sons at a later date.

    Thinking of you

    Love

    Mameeskye
     

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