• At What Point To Call In Hospice For Pain Relief

    Asked by kos56 on Sunday, February 24, 2013

    At What Point To Call In Hospice For Pain Relief

    My husband has Stage 4 metastatic lung cancer and continues to smoke -- I have posted about this here about a week ago and gotten many good responses. He is waiting to be accepted into a clinical trial and should start intensive chemo either late this week or next week. Meanwhile, the pain in his face and neck/throat has gotten so bad that even with 10mg oxycontin and 1500 mg vicodin it is not relieved for long, he cannot sleep, feels loopy, is in a bad/angry mood, and has no appetite. He commented to me, "if I feel like this now, going through chemo will be suicide." When he went through chemo 2 years ago after his original diagnosis of 3A lung cancer, he had a very rough time. Now they are going to add an extra drug or two. I told him to call his doctor and tell him the pain meds he is on are not doing the trick, but he refuses. What have other people's experiences been with when it is time to call in Hospice as it is my understanding that they are the people who can help.

    10 Answers from the Community

    10 answers
    • nancyjac's Avatar
      nancyjac

      I think you may not be understanding hospice. To be in hospice requires an order from his doctor indicating that in his professional opinion he has less than 6 months to live. Hospice care is primarily palliative care (maintaining comfort but not trying to cure or improve his condition). But if he is planning to participate in a clinical trial and take chemo, that is counter indicative of hospice care since he would be in active treatment. He could ask his oncologist for a referral to a pain management specialist, but if he has already refused to call his doctor, then that may not be a promising alternative for him either. Do you already have or can you get a medical power of attorney for him? That may be the best alternative if he is at the point where he becomes incapable of making his own decisions.

      almost 4 years ago
    • carm's Avatar
      carm

      Kos56,
      I am an oncology/end of life nurse and although I can understand his apprehension, we cannot accept a patient into hospice without a physicians order. If he does not wish to do the trial then he has to let his doctor know. Given that, it might be the only way to get that order. Understand that most hospice organizations will require a DNR even if your state doesn't ask for one. He has to consider that as well. In terminal care, there are 3 arms, palliative care, hospice care, and end of life care. They are all different and have different timeframes and goals. If your husband is in his right frame of mind, no physician will sign off on any document that would deem otherwise unless it can be medically proven and as suggested, if you tried to do so because you want it for him, an insurance company might not look kindly on the implication no matter how good your intentions are. It has to be his choice and when a person contracts with hospice, they will indeed be asked if it is their choice made freely and without influence. He might consider a palliative care consult for the management of his pain. 10 mg of short acting opioid along with a combination of tylenol and hydrocodone is not that great of a coverage. He needs a long acting opioid to accompany the short acting. The oxycodone should only be used for breakthrough pain. Sometimes an adjustment of pain meds is all it takes to turn the tide. Best of luck, Carm RN.

      almost 4 years ago
    • Mollie's Avatar
      Mollie

      Our hospice did not but a time limit on her life, rather their requirement was that she no longer be in treatment (ie. chemo, rad etc...). However while she was still in treatment she signed up for transition hospice which made it very easy to go "full" hospice when she finished chemo. You can call them and set up a meeting to get info if nothing else. Good luck.

      almost 4 years ago
    • CAS1's Avatar
      CAS1

      Is he having this pain due to active cancer in this site? If yes, then I would wonder why radiation like proton or cyber knife is not being offered at the same time as chemo? Using them together offers superior results however given he is in a trial this may not be available therefor I would ask why radiation therapy is not being considered . Has he been tested for mutations..If "NO" I ask you to demand that this be done..Why? because there could be targeted drugs available for his mutations and there are many many trials going on for specific mutations that are much easier than Chemo. Both primary and mets should be tested if possible( If they can do biopsy) because muts can be diffrent.

      almost 4 years ago
    • kos56's Avatar
      kos56

      Thank you all for your fine answers. They have educated me. I feel I am between a rock and a hard place as my husband wants to run the show, but the decisions he makes are not in his best interest which is why he is in this situation in the first place. The current doctor said radiation was not an option, as the problem is systemic so chemo is best. He did not offer gene testing -- I think some sort of gene testing was done 2 years ago and came up neg. Dan has repeatedly refused a 2nd opinion. So, as he calls the shots, and the pain gets worse, I'll keep suggesting things, and based on what he wants, it will take its course. Thanks again.

      almost 4 years ago
    • sszafar29's Avatar
      sszafar29

      I can't believe he still smokes. How sad!

      almost 4 years ago
    • carm's Avatar
      carm

      kos56,
      Sometimes the best way to deal with a situation like this is to recognize what might be the underlying issue. Perhaps your husband feels as though he is not in control, and so holds tightly to the decision makling and his decisions might be based off of his fears or his pain. It might be better for you if you told him that you know he is running the show, and all you request is that he give you direction. Ask him what you can do to support his decisions and help him achieve his goal. He might open up more if he feels that his independence is still validated by you. He has made some bad choices in his life (haven't we all), yet smoking alone does not bring you to this place he finds himself at. If a gene is mutated, it can be activated by a carcinogenic but the mutation itself is not within his control. I understand your concern, and although chemotherapy might not be his first choice, you can discuss fractionated doses to ease the side effects with the oncologist or even the principal investigator of the study. Participating in a study is such a selfless act. These participants give their bodies at risk, to science in an effort to help others; often without benefit to themselves, and his participation may save many future lives. We all have our weaknesses and for him it is smoking. Even if he were to quit now, I doubt that he could reverse the outcome so if that bad habit brings him comfort and displays his independence, it is a small price to pay. My heart goes out to you. As a nurse I know all too well that the caregivers give so much of themselves always trying to find ways to make their loved ones path a bit easier. Instead of trying to change him, perhaps you might seek support for yourself so that you can deal with this situation devoid of the anxiety. Life is never the way we plan it. We may all dance to a different tune but we seldom get the opportunity to pick the music. Best of luck to you, Carm RN.

      almost 4 years ago
    • kos56's Avatar
      kos56

      Thank you carm for your caring response. I spend a lot of time listening to him ramble about what he wants to do and he always thanks me. I am his sounding board. But of course it is hard to watch him smoking cigs and pot from a pipe but I understand it gives him comfort. He is in bed most of the time as the pain meds he has make him spacey even though they don't really stop the pain. He has no appetite, and has refused to eat so far today. So, I will continue to let him do as he pleases, listen to him, and try to get him to eat.

      almost 4 years ago
    • carm's Avatar
      carm

      kos56,
      Working in end of life care I can tell you from my experience that you can normally go 6 weeks without food, so missing a few days is not something to worry about as of yet. You know, it sounds to me as if he needs those pain meds adjusted. I can imagine what that vicodin is doing to his stomach. I am not sure if he has a case manager, but you might try reaching out to that point person who can at least let the oncologist know of any behavioral changes. At the very least it gives his doctor a compass; a starting point at the next meeting. I can imagine that in his own way he is very thankful to have you, and it is good to hear that he acknowledges your contribution to his care. Of all the drugs he has on hand, I have no doubt that you are his best medicine. Still, this disease has a way of not just taking over the body, but assuming a persons identity and if you let it, it will come to define you. It has to be thought of as a disease, an abhorant mutation of anatomy and nothing more than that. I get the impression that he is giving it much more power than he should. Thank goodness he has you to redirect him, and show him that he is so much more than his disease. You see the beauty in the man and not the ugliness of the malady. That one difference is the warm light at the end of his path, so your patience and concern is not in vain. He is a lucky man. Don't forget to look into the mirror every now and then and give that gal her due respect and deep regard, Carm.

      almost 4 years ago
    • FreeBird's Avatar
      FreeBird

      I can only speak from our personal experience with hospice. Hospice is reserved for when you no longer accept care towards a cure for your disease, and it looks to the doctor based on what's happened with other people in a similar situation that there might be six months or less left without treatment. End-of-life care, with the aim of keeping you as comfortable as possible and empowering you to do whatever you're able to do. My dad was no longer receiving treatment for his cancer, and so it made sense to try Hospice. The nurse comes twice a week, and have done an excellent job managing his pain. They offered to have aids come if he needs help with bathing, or whatever. The doctor visits the house.

      If he decides that he wants to still receive treatment, there are specialists that can help manage pain-- palliative care. It was difficult to decide to not continue treatment. But it was a decision made based on how dad feels, what the science shows about hopes for a cure, and a judgment regarding quantity vs. quality of life. He feels much better without continuing to go through chemotherapy, with the realistic hope for only possibly additional months with his type of cancer, stage, and other conditions. Best wishes to you both.

      almost 4 years ago

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