Hospice Help

[Bino]

My mother was diagnosed with stage III ovarian cancer 18 months ago. She was 61, healthy. There were complications after her initial surgery and while in the hospital for the second time she had a stroke, which left her with right side paresis and (severely) cognitively compromised. Today she lives at home with 24 hr care. She has a G Tube, colostomy bag and a fistula in her pelvic area. Her condition is terminal. No health care team does not have an estimate of how long she will live. She lives at home with 24 caregivers. When the fistual appeared 3 weeks ago her oncologist advised us to call Hospice. We did, they came, and an RN immediately said she was going to die of septicemia. We were preparing for her death. 8 days later, due to lack of experience and professionalism, a different Hospice organization came in and immediately diagnosed the "hole in her stomach"as a fistula and that her death was not as imminent as we were told by the previous Hospice. Regardless, they continued my mother on morphine - 30 mg q 3 hours via G tube. Other than the fistula, my mother's condition has not changed. Yes she is depressed, confused, distracted... which is damage done by the stroke. But her vitals are stable and the only pain she refers to is that of her right side limbs, which she has been complaining of since her stroke 18 months ago. But in the past couple of weeks Hospice has decided that this pain/discomfort in her right leg/arm requires 190 mg of (recatally administered) morphine q 12 hrs. My mom has been suffering, we all have, but at least she was able to be present, as much as she could. She was able to sit and watch television... And I understand that she is dying. But she is not experiencing any retractable abdominal pain. With this increased dose of morphine she out, all the time. She looks dead. She barely arouses when we change her diaper. She is the worse I have ever seen her, and my mother looks bad a lot of the time. Is this a correct assessment by the hospice nurse, to have increased her morphine to such an amount? I understand giving that dose to her near the very end if she is in intense pain, but now? Please, what is the logic? I do plan on speaking to the nurse, but my step father is her power of attorney and he just goes with anything the medical staff says. And I don't want to voice my opinion (again) and approach this Hospice staff without knowing more. They will communicate my dissention, if you will, with my step father. And I don't want things to be more difficult than they already are. Please advise.        

[Helmar]

Hello... I'm wondering why they are giving your Mum morphine if she's not in pain now? If your Mum doesn't need morphine, then she is better off without it. When she is awake and 'with it' does she enjoy her life... does she indictate that she wants to keep going? That should give you an idea what her thoughts are, but if she is 'blotted out' with morphine, she won't be able to tell you what she wants. You are her daughter, and should have some say in how your Mum is being managed. I was dx Stage 4 ...4 years go, and I also have a colostomy. Dying is the last thing on my mind.. and I expect your Mum's too, so yes... I would speak up and question their idea of morphine if it's not necessary. I hope I am not speaking out of turn, but I feel for you... and your Mum, as I know I want to be around with my family for as long as I can, and I'm sure your Mum would be too. Please give her that chance. Maybe a little 'chat' with your step-father wouldn't hurt either, as maybe he needs to know your views on YOUR Mum too.
I can only wish you all the best, and keep fighting for your Mum.. :-)   Hugs...Helen...

[rootietootie]

I am sorry you are in that situation.  I know it must be hard for you and your family.   Everyone just wants the best for her, and there are many opinions.  The hospice nurse is very concerned about keeping her out of pain.  Pain control is a big issue in hospice so that is a priority for her.   I would bring it up with her and your step father too.  I agree that if she doesn't need it, she shouldn't get it.  All of you guys need to keep open communication with the nurse about your feelings and her care.  I am sending you and your mother prayers!   Shannon

[marie3B]

My heart goes out to you. My friend's mother recently was under hospice. She, too, became over medicated. We asked that the pain med be backed off to allow her to regain her ability to talk. For her it worked. She was able to have some quality of life for a while. She had end stage lymohoma. On the other hand, when my mom had ovca we had to keep her sedated. She had no quality of life without the morphine. When the morphine was reduced she became very restless and was in obvious distress. Because of that we used the morphine as palliative sedation to give her peace. You can try to reduce the medication and always go back to it if it does not give her added quality time. I wish peace for all of you at this horrible time. Marie

[PF_PVD]

I also can't offer advice, but I'd like to offer my sympathy.  This is really a difficult situation for you, and it is something I wish no one would have to deal with.  I can understand you want your mom back for a while if possible, and it sounds like the medication is making that impossible.  I hope you can resolve this and everyone can find peace. Paula

[hopeshell]

My heart goes out to you. It must be so hard to see your mom like this.  I have lost several close relatives who went with hospice.  It is normal for them to be like that in the last weeks.  It sounds like they decided she shouldn't be in any pain and made a judgment call.  I really don't know how to advise you but am sorry to hear of the situation and will keep you in prayer.  Take care.