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end stage emphysema and hospice care

Posted , 11 users are following.

debbie99180
debbie99180

I am 61 yrs old. and was dx with late stage emphysema about 3 yrs ago, was told I had a 20% chance of being alive in 4 years. I have been on continuous oxygen since that time and 30 mill of prednisone daily. In the last 2 years I continued to decline, and I retain co2, being on higher oxygen saturation made my breathing worse, we lowered it to 1 and I did a little better but still bad, My oxygen saturation has always dropped down in the 5o's highest it gets most times is around 77 which I am comfortable with at that. I was told to get my affairs in order by my pulminologist and pc Dr. So I went on hospice, Hospice takes very good care of me and glad I decided to go on it, except I was told that after so much time i had to show a decline ( with medicare)  I can't get out of bed hardly but to walk a few feet to bathroom then it takes me 20 minutes or so to get enough air to go back to bed, have not been out of the house or got dressed in months bedridden and taking small doses of morphine, Although bad, I kind of plateaued. Does any one know if I don't continue to decline even with my symptoms can medicare require  I end hospice? I also had a catheter because of incontince now too. Any help or ideas would be helpful. I live in Oregon and can't find a good forum other than here in the UK.

1 like, 42 replies

42 Replies

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  • sharon99704
    sharon99704 debbie99180

    Posted

    Debbie thank you for your post.  I too am in the end stages of copd and am so grateful when an old timer like yourself speaks.  Mostly it is the young seeking answers as to what will happen to me now.  I guess I'm the same way.  What else can this disease do to me?  Posts like yours answers that.  I have lived with the disease for over 20 years.  Just the last year has been problematic and now I am on oxygen full time.  When sats of 70 happen I think how low can it go and still live?  You answered that for me.  For myself I have morphed into pulmonary hypertension and now the heart is affected.  I have a caregiver to do heavy tasks I can no longer do.  I live mostly indoors these days like yourself.  I know the difference between living and being alive now.  I envy you being in Oregon as you have access to the right to die business.  If I had it here in Hawaii I would apply.  Thanks again your your story.
    • debbie99180
      debbie99180 sharon99704

      Posted

      Hi Sharon, I am sorry you too are end stage. I can not go out side at all I can not get dressed so I live in my pj's. I had asthma for years but it turned to copd then got phemonia and then emphysema. There are times I thought about the right to die but then the next day i might have a decent day, keep in mind my good days used to be my bad days so they are still bad, its just that my bad days are so much worse now.but not sure I can do the right to die even as bad as i get. One thing thats good to know is, when your oxy meter ( for finger) shows how bad you are like going to low, pain pills and too much morphine can make you not wake up, but low doses of morphine actually help me to breathe better, its not great but comfortable. I used to live in hawaii for  10 years and I think the high humidity would be to hard on me. I wish you well.
    • sharon99704
      sharon99704 debbie99180

      Posted

      Hi Debbie,  I loved hearing back from you.  I live in a very rural part of Hawaii.  I'm on the big island and we have a hugh doctor shortage here.  It is humid but I live in the northern end of the island and the trade winds blow mightily.  I love that fresh air.  When I first came here I could live nicely without oxygen due to the air.  After a couple years here I was back on it.  I don't have any nearby people with copd so I'm a party of 1.I'm very grateful for this connection and other people like me.  As I said before , not to many post the very end state woes.  I am still ambulatory and can do many things for myself.  Today as well as every Sunday I rode my scooter to the post office which is 2 miles away.  Love this ride.  The wind and the sunshine combined feel so good.  Reminds me of a bike ride as a child.  I hope your day is also a good one.
    • debbie99180
      debbie99180 sharon99704

      Posted

      Sharon- I'm glad you are still able to get out, don't quit doing that if you read my other post it really makes a difference between my grief and then getting pnemonia, I went straight to being unable to go anywhere. God bless you!
  • lill83898
    lill83898 debbie99180

    Posted

    Hello Debbie

    I believe you are speaking of being in a hospice and not under at home care.

    Here is my understanding of how the rules work where I am.

    Because hospice palliative care beds are very few compared to the demand, it is required that people be expected to likely pass away within a specified time frame.

    For example, within a month.

    As stark and seemingly cold as this sounds, the truth is there are several realities that must be addressed in providing as comprehensive a service to so many that are in need.

    It could well be, that your insurance has rules that control this time frame and will indeed stop coverage once the time line has been breached. There are likely quite a number of others who are waiting for a bed in hospice and ifa person is allowed to stay indefinately, there would be no ability to admit any.

    Hope this makes sense.

    If you are sent home,then you should be speaking with a social worker or discharge planner who will aid in setting up required care there. Take all that is available to you.

    Lill

    • aitarg35939
      aitarg35939 lill83898

      Posted

      Lill, in the States one can receive hospice care at home. There are not nearly enough in-facility hospice beds to cover everyone.
    • lill83898
      lill83898 aitarg35939

      Posted

      I see.

      We have hospice care and it refers to specialized facilities that people are admitted to near end of life, if they so desire.

      The other alternative is referred to as palliative home care, whereby a person chooses to die at home with the support of family/caregivers and professional services such as nursing, spiritual advisors, physio, nutritionists etc...

      Two different funding and two different circumstances.

      Being admitted to Hospice is done when death is anticipated within four to six weeks or so. 

      Lill

    • aitarg35939
      aitarg35939 lill83898

      Posted

      When Medicare and insurance first started covering hospice care, it was only in-facility and a doc had to state that the case was hopeless and death would come in 6 months. Then the scope expanded beyond its origin here, just for AIDS patients, and there weren't enough beds so the same entities that ran hospice facilities expanded to include at home hospice. Medicare began covering those services, and added the provision for 3 different 6 month periods, mainly because too many folks waited to go into hospice care for fear they'd use up their 1 6-month period. A friend of mine did that, she and her husband thought she'd live a long time when it was obvious to me she wouldn't live 2 weeks - she had in-home hospice for 1 week. So sad when her last month could've been much more relaxed by facing.reality.

      Last year I saw something very very strange: a friend supposedly in in-facility hospice with a respirator and a feeding tube - and complaining that she thought she would've died already! We were not close enough.that I felt comfortable saying that if she wanted to go, she just had to stop the feedings and the forced air! As soon as they finally.stopped those, she went very quickly.

    • debbie99180
      debbie99180 lill83898

      Posted

      thank you Lill- hospice here is at home, not in hospital or  nursing care. they come to my house which is good because I can't leave or get dressed, I have about 6 different hopsice nurses that came at different times but one reg, one that comes at 3 times a week also have a bather and other things if I need it. the time time frame here is  you can get off hospice one time and get back on it, then they have to say you have 6 months or less, then asses you and every two months say you are decling, in my case I am bad  but kind of stayed this way so was worried,
    • debbie99180
      debbie99180 lill83898

      Posted

      Hi lill- thank you for your advice. I'm at home in hospice and they come to my place. I can not leave,'yes you made sense,'but it is not hospice who has the problem, it is my Medicare , not a shortage of beds ect.. Although there is always some one out there worse than me I'm also worse than someone else, and my breathing, which keeps us all Alive, my

      Pain and struggling and suffering every day is not something that should be taken lightly by them. Thank you for your reply

  • james80978
    james80978 debbie99180

    Posted

    Such a sad story Debbie but I am sure if your health service was fre like our nhs in the UK where you don't pay for treatment or drugs the copd would have been under control much earlier to give you a more comfortable life.Wishing you the very best
    • debbie99180
      debbie99180 james80978

      Posted

      Thank you James- I know that in Canada you all have a lot better coverage than we do here I wish things were better here. But I have been in Medicare since my lung cancer, so I pretty much have had all the mess I need. Once your emphysema turns to late stage and hour bedridden you actually are not suppose to do to much because you can make it worse. Even sitting up is hard, but I do have all the mess I need thank you
  • Vee2
    Vee2 debbie99180

    Posted

    There are many US based COPD discussion forums if you go to COPD international forum they will be able to advise you on lots of other US based discussion forums for COPD and most likely these will be better able to advise you concerning Medicare and hospice situations.

    There are a few US members posting here but far more at the COPD international site.

    Daily Strength is another huge US based support site for COPD and for many other health issues.

    I am sure you will get some good advice from both COPD International and Daily Strength.

    Check out American Lung Association website also, just type in their search box about medicare and hospice.

    Best wishes V

     

    • debbie99180
      debbie99180 Vee2

      Posted

      Thanks V I will check out the daily living one, I did check out  the ACS the problem is not to many are end stage and cant find the  answer plus most of the forums are out dated but will check those out.
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