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Thread: Hospice - a support thread

  1. #1

    Hospice - a support thread

    This thread is for those who have entered into Hospice care (as known in the U.S.). I've looked over the thread titles covering the past 6 months, and there is a scattering of threads with that word. But often within some other subject's thread will come up the topic of Hospice. I wanted to make a current thread that is dedicated to the topic of Hospice. Hopefully we can have discussion on hints, problems & solutions, disease progression and comfort control, resources, etc. My intention is that this thread will support and serve the patients and families who are now on a different path than seeking a "cure".

    Noteable (from Wikipedia): Outside the United States there may not be the same distinctions made between care of those with terminal illnesses as against palliative care in a more general setting. In such countries, the term "hospice" is more likely to refer to a particular type of institution, rather than specifically to care in the final months or weeks of life; and specific end-of-life care is more likely to be included in the general term "palliative care".

    I will start the thread off with the news that my husband has now entered into Hospice. There are no longer any chemo options that are evidenced as a "cure", and for him, the treatments have become just too debilitating. He has chosen to now pursue peaceful comfort in his home. I'd like to hear from others (patients or their caretakers) who are taking this same road, so we can all have a sharing of experiences.
    Tarceva hints in this thread.

    Hospice - a support thread here .

  2. #2
    I want to offer the following information from the American Academy of Hospice and Palliative Medicine. It gives guidelines for "When to Seek Hospice Care".


    When to Seek Hospice Care

    There may come a time when efforts to cure or slow an illness are not working and can even be harmful, rather than helpful. If that time comes, you should know that there's a type of palliative care - that can help ensure that your final months of life are as good and fulfilling as they can be for you and your loved ones. Hospice is not about giving up. It's about giving you comfort, control, dignity and quality of life.

    Insurers, Medicare, and Medicaid will generally provide coverage for hospice care if your doctors determine you likely have six months - in some cases a year - or less to live if your illness follows its normal course. Unfortunately, most people don't receive hospice care until the final weeks or even days of life, possibly missing out on months of quality time. This may be out of fear that choosing hospice means losing out on a chance for a cure. Sometimes doctors fear that their patients will feel abandoned if they suggest hospice.

    So how do you know when it's time for hospice care? When to request hospice care is a personal decision, but it's important to understand that at a certain point, doing "everything possible" may no longer be helping you. Sometimes the burdens of a treatment outweigh the benefits. For instance, an aggressive treatment might give you another month of life, but make you feel too ill to enjoy that time. Palliative doctors can help you assess the advantages and disadvantages of specific treatments.

    Hospice care can help you continue treatments that are maintaining or improving your quality of life. If your illness improves, you can leave hospice care at any time and return if and when you choose to.

    Following are some signs that you may experience better quality of life with hospice care:

    You've made several trips to the emergency room, and your condition has been stabilized, but your illness continues to progress.
    You've been admitted to the hospital several times within the last year with the same symptoms.
    You wish to remain at home, rather than spend time in the hospital.
    You are no longer receiving treatments to cure your disease.
    Hospice care is not for you if you are benefiting from treatments intended to cure your illness.
    Tarceva hints in this thread.

    Hospice - a support thread here .

  3. #3
    Super Moderator Top User
    Join Date
    Sep 2010
    Hi Spouse,

    My Dad's lung cancer progressed quite quickly so we only had a couple of weeks experience with hospice folks. I'm glad we had their support.

    Thank you Spouse for starting this thread....too many decline hospice thinking that it means giving up. Quite the contrary, it mean holding on to quality of life for as long as possible.

    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:

  4. #4
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013

    Thank you for starting this thread. I think it is important that people understand by engaging hospice does not mean giving up. I think that most feel that way but what hospice can provide is very valuable.

    I do not have first hand knowledge of interacting with hospice as once my mom declined it was rapid and swift. I do regret we did not consider it towards the end of my mom's journey though. Fortunately, we were able to take care of her but I think that to this day, almost 15 months since loosing my mom, my surviving dad may actually have benefited from hospice being with us. Hospice is not only there for the patient but for the family as well.

    I hope that many will chime in here and give there experience. I know there are some stories with hospice that are not good for whatever reason but the overwhelming majority is of caring and much needed support.


  5. #5
    We were lucky in that my husband's GP had been planting the seed for the idea of using Hospice, for months. And I'd had them come to the house a while ago, to introduce themselves to my husband and to give me first-hand-information on their services. So, when it was time to call upon them for help, it was just a phone call to an organization that I'd already researched. That made it a much easier for my husband to make the difficult decision to stop chasing the elusive chemo-cure, because he already knew that there was someone there to help him with the next stage of his journey.
    Tarceva hints in this thread.

    Hospice - a support thread here .

  6. #6
    Experienced User
    Join Date
    Aug 2013
    Hi Spouse, thanks for starting this hospice thread, maybe this way we can lean on each other. We had a visit today from the Social worker, she didn't do much but just talk to us and get a feel of the family. She did tell me that the Carnation Instant Breakfast is just as good as Ensure and A LOT cheaper, so I went and got some of that today. They also delivered oxygen today, he doesn't need it yet but we have it just in case.I noticed he is starting to get more congested and coughing more. On a good note he is feeling better since they changed his pain meds. I just wish he would pick up some weight...he is down to 163, and that is with swollen feet and legs, so I don't know what his real weight is, he is nothing but skin and bone and very weak. How is your husband doing Spouse??

  7. #7
    Hi Dar. It's good that you are getting some helpful hints on your husband's food choices. My husband, like yours, has lost a lot of weight, and we know that is not going to be reversed. So, my goal is to get him to at least eat enough to fuel his body for his limited needs (he is mostly in bed asleep, although he still gets up for eating and hygiene). I think he's probably down to 140-142. We are not bothering to weigh him anymore, since there is nothing to be done with that information (so why get depressed by seeing those lowering numbers). He cannot eat anything foamy, or too thick, so all milkshake/Ensure/etc is out for him. But we are having luck by putting soup into a blender, since that comes out thin enough for him to be able to eat.

    How are your husband's meds delivered? In person, or mail/FedEx/UPs?
    Tarceva hints in this thread.

    Hospice - a support thread here .

  8. #8
    Experienced User
    Join Date
    Aug 2013
    All his meds come by Fed/Ex

  9. #9
    Our household is going through the small bumps-in-the-road that happen when learning any new system of care. But for the most part, having Hospice has been a wonderful support system. With their nearly daily checkups on my husband's blood pressure, etc, it is very reassuring to me as the caretaker, that there is another set of eyes on the situation. I've connected with a Hospice volunteer that will come in to watch over my husband while I do the weekly duties that everyday life demands ... errands, banking, etc.

    It is interesting to see the reaction that most people have when they hear that he is "in Hospice care at home". Most everyone wrongly assumes that means he's in his last few days or weeks or life.

    Since I've switched my caregiver focus from chemo to comfort, the weight loss problem with my husband has become my immediate concern. We are currently in another of those sort of medical-honeymoon-periods around here, since my husband is still mobile enough to use the restroom, get into a chair to eat, etc. I wonder how much longer he'll have strength enough for that ... it's weird how I've mentally dropped all of my previous chemo concerns/research, and moved on to things totally different (comfort, pain control, maintaining strength, weight loss).
    Tarceva hints in this thread.

    Hospice - a support thread here .

  10. #10
    Spouse: my two cents worth, when our concern was weight also with my wife, it was eating whatever she could to us it did not matter what to keep the weight stable. At her moment, the eating healthy thing was gone, if it was a whole carton of ice cream, so be it, as many calories as possible.

    I do not know where you are with comfort, but we saw my wife go much faster than I thought to never getting out of bed and not eating anymore, mostly liver was becoming swollen. Take care of your husband and remember take care of yourself. Everyone is different, but this my experience with Angela.

    wife angela diagnosed with Ampullary cancer. Sep/12
    with mets to her liver
    started folfirinox on oct/12 with cd scan dec21
    ct scan scheduled in mar/12
    On Gemcitabine for 4 cycles
    Then another ct scan with good results
    Hoping for the best because she is my hero
    A few more spots on her liver and original,ones are larger
    New scan last week and showed improvement: scan showed
    no new tumors and big one got smaller, what a relief, best news
    October 2013 starting chemo again with radiation ( biggest tumour only)
    Doctor last resort chemo after being told exhausted all chemo options, caught us off gaurd
    No radiation, tumor too large, starting chemo again for 8 weeks and then scan
    waiting for scan, but do not want to see results until after the holidays
    results not good and now we have great days with family until time takes over
    never thought we would be here waiting for the end that we hope will never come
    Passed away, April 3, 2014. 18 months from since being diagnosed


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