End-of-Life Care for Stage 4 Lung CA

Maggie91
Maggie91 Member Posts: 8
edited March 2014 in Caregivers #1
My brother was diagnosed three weeks ago, very late in the disease process, with Stage 4 lung cancer. He has schizophrenia, as well as cancer. We just moved him from the hospital to a nursing home. At least one family member visits him every day. Usually more than one family member visits each day, and we try to go at different times, in order to provide maximum "coverage."

To the extent that my brother is able to participate in decision-making, we include him, but he is limited in his ability to think. He is legally competent, just not actually competent, which is a complication. We did get him to sign a Living Will, about ten days ago, but we still cannot legally speak in his place as his health care proxies, until he is no longer able to speak for himself.

My brother is open to family influence, but it upsets him to talk about the terminal nature of his condition. So we have a lot of constraints in trying to help him. There is the legal constraint that we are not his guardians, there is the cognitive constraint that he really cannot make decisions on his own, and there is the emotional constraint that we do not want to force any kind of emotional confrontation that will increase his suffering.

Mr brother is giving us clear nonverbal signals that he wants to simply continue living as normally as he can for as long as he can, that he does not want aggressive treatment, and that he does not want to have any big discussions about anything. So that is the direction we are trying to go, as much as we possibly can. We are opting for comfort care. That kind of summarizes the situation. Now for my specific questions.

We thought that my brother would be eligible for hospice services in the nursing home, but now that he is there, we find out that they have him on Medicare reimbursement, and supposedly he is not eligible for hospice as long as he is on Medicare. We are reluctant to try to change his funding status, because it does seem as if he is eligible for more services, as long as he is on Medicare. But is there any way the family can get help, in the meantime, with understanding the dying process and getting prepared for what will happen in the future? Before he was discharged from the hospital, his doctor there was talking about his life expectancy in terms of weeks.

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Welcome to our caregiver family
    Hi Maggie,
    So sorry that you are having to go through this. You are a wonderful sister, caregiver, and friend to your brother. At this stage, I do not blame him for not wanting to do anything about his condition. As far as hospice is concerned, I would call them and see what they say. Ask at the nursing home, or the hospital, or the local cancer center what to do in his situation. There has to be someone who can help. Even calling medicare might be helpful. You will want to get on this right away, considering that he may only have weeks left. Make these the best weeks for him. Tell him how much you love him. Tell him how much you care. Tell him that it is ok for him to go. This will give him the peace he needs to go on.
    Best of luck and let us know how you make out.
    Tina
  • Maggie91
    Maggie91 Member Posts: 8
    #3
    My brother passed away on May 6
    His change in status at the nursing home took care of itself, because very shortly after my last post, he became unable to do the therapies (PT, OT, and whatever)that justified his being a Medicare rehab patient. At that point, he was reclassified as a hospice patient. He was in severe pain for about the last two days of his life, and hospice did not help with that. As far as I can tell, the hospice agency did not really do anything for him except to change out his air mattress and oxygen concentrator for identical equipment that they owned. But the fact that he was listed as being a hospice patient did keep extraordinary life-prolonging measures from being employed, and that kept his suffering from being unnecessarily prolonged.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Maggie91 said:

    My brother passed away on May 6
    His change in status at the nursing home took care of itself, because very shortly after my last post, he became unable to do the therapies (PT, OT, and whatever)that justified his being a Medicare rehab patient. At that point, he was reclassified as a hospice patient. He was in severe pain for about the last two days of his life, and hospice did not help with that. As far as I can tell, the hospice agency did not really do anything for him except to change out his air mattress and oxygen concentrator for identical equipment that they owned. But the fact that he was listed as being a hospice patient did keep extraordinary life-prolonging measures from being employed, and that kept his suffering from being unnecessarily prolonged.

    Sorry
    I am so sorry for your loss. I hope the family is at peace as your brother is. Take care, Fay

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