To add a U.S. perspective:

Under Medicare, you can elect hospice care when your doctor says you are terminal within six months. By electing, you get home care you would not otherwise get -but- you agree to give up curative & life saving measures. You can change your mind at anytime & go back to regular Medicare. And they don't yank your hospice care if you manage to live more than 6 months.

My experiences with home hospice for my Mom were terrific. She was able to pass at home with adequate pain relief & far less anxiety.

Does anyone have copd-specific experience with home hospice? I have verified I could receive oxygen & morphine but wonder now if cpap or bipap are allowed.....

Yes....it is more what is available in OZ......one blessing is probably being such a young, low populated country the powers the be, can afford to provide the best available options.....

Be interesting what Canada n UK offer as well....maybe it is basicaly interesting in how our Lung issues are dealt with away from the usual Pharmaceutical aspects..

Take care and hope 2016 is much brighter for all of us.....For me this was a year i rather forget....xxxxxxxxxx.

My husband has COPD, we live in the US. We've been working with Hospice now for about a month, since his last hospitalization/exacerbation. I say "working with" because so many people think that Hospice is a place where you go to die, and that's just not the case. Your doctor does have to say you are terminal within 6 months, and many doctors are really hesitant to go there, especially for COPD patients, because it's so hard to quantify. Some have learned to ask themselves the question "would it surprise me if this patient died within 6 months", and then can make a referral that can be much needed and appreciated. Hospice has been a huge emotional jump for both my husband and myself. It has been good so far, a nurse comes to our house 2 times a week, takes vitals, makes suggestions, brings meds. They are available at anytime, and are helping to set up everything we could need as far as meds, equipment, etc. They provide everything related to his COPD diagnosis at no additional charge, our secondary insurance pays for the meds he takes for other issues such as heart and thyroid. We also have access to a social worker, to help with those conversations no one wants to have 8-), and help us wade through paperwork, and some home help folks for showers and stuff like that, and a Chaplin if we want to talk to him.I don't know if cpap or bipap are provided, as we don't need them, but I'm sure that they would figure out a way if we did. It is my feeling that COPD patients are really under-served by palliative care and Hospice, mostly because of the hesitancy of the medical community to make the "6 months" call, and because we're so freaked out about initiating the conversation ourselves. It's working out well for us so far, and has really given me some much needed peace of mind. Thanks for letting me ramble....

My Doctor is a GP but her specialty is Palliative and Hospice care ..I didnt choose her because of these things but I sure am glad that I have her now that I might need that type of care...I have spoken to her many times about hospice.so I know what to expect sort of...I think whatever lifts the burden off of our loved ones...is the right thing to do....

As a retired home care nurse, I can attest that Hospice is a wonderful organization. It provides the care and support to not only the one who is at the end stage of a terminal illness, but also for the family--who truly, at times, require assistance and caring concern more so than the patient.

Not long ago I experienced yet another terrible exacerbation of my emphysema resulting in a deep decline in my already poorly functioning lungs. After being discharged from a lengthy stay at hospital, I felt that hospice was now needed and the pulmonologist in charge of my care for over two years agreed. The nurse came to explain the program to me and all was acceptable until I related to her other chronic diseases and disorders that I have. I explained to her that I wished to continue treatment for those problems and that, right then and there, disqualified me from hospice care.

It never occurred to me that taking medication or having routine testing and possible arterial stenting for my vascular disease could in any way change the onward progression of my terminal emphysema. To me it means keeping enough blood flowing through my arteries to keep my kidneys and other organs from failing. Death from emphysema is one thing, death from the failure of other organs is another.

Because of my personal experience with hospice I decided to get a second opinion regarding my emphysema. The pulmonologist I'm seeing now has a very different attitude toward my lung status...he believes that there is more that can be done to extend the quality, and possibly the quantity, of my life even though I am diagnosed with Stage 4 emphysema and maintaining with 18% lung function.

I am grateful for that second opinion, without it I might have denied myself care for other physical concerns as well as the more appropriate care for my lungs.

I know that hospice will be here for me..just not yet.

from my understanding "hospice" is for terminal patients that treatments aren't working (such as chemo).
As Caitsmom said, it is when you are "deemed" terminal with 6 months or less left to live.

It is considered "comfort care' & provides medications to keep a person comfortable the last months.
02 IS considered comfort care, as bipap machine is also, because a bipap machine helps you breath but won't keep you alive artificially.
(also meds like bloodpressure, gerd medication, inhalers etc are given as that is considered "comfort care" of medications you need. (including antibiotics & prednisone if needed for an exacerbation)

Palliative care is much like hospice and they also use "comfort care" BUT you can continue treatments to try to cure your condition.
(this is my understanding & palliative care came to be---not everyone wanted to give up treatments.)
http://www.webmd.com/palliative-care/palliative-care-mr

btw; when i was a caregiver for my mom & dad; they both kept thier regular Dr & the hospice nurses would call the personal Dr for advice of medicine changes, if they needed more, less, different meds to keep them comfortable.

Wow, this is a hard one. My mom fought COPD/Emphysema for a long time. She took Albuterol, Symbicort and the almighty Prednisone until she had no immune system left. She was then diagnosed with Lung Cancer that had spread to her brain. Hospice came in and yes they help with the family but they are there for "the Last Breath" My mother had taken neb Albuterol for years. The hospice people had my brother and I switch her Albuterol and replace it with Moriphine in the Neb. My mother immediately knew. At the end of that Neb session she asked to just keep the Neb mouth piece in her mouth. She then refused any more treatments. She died less than 24 hours later. I will never forget the look on her face, I still haven't been able to forgive myself because I did not say NO to the nurse. No matter what death sucks but the dieing should be treated with respect and honesty

Jeez I still cry about it. Today is my 54th birthday my mother and her mother died of COPD related illness ie Cancer before the age of 60. my mother refused chemo and went quick. her friend did chemo, I sat with her too, it was slow.. Life is short live every day and keep moving forward.. Because really that is all you can do. tillerc

Oh, Tillerc, I wish you didn't have to feel that way. I don't know how old you are ,but with every passing year I see death as a friend.
Your mother may be blessing you for going along with the nurse.
I would if I were suffering. We weren't meant to live so long.
Past a certain age I just don't believe in fighting it on and on.

Till, I am very sorry your mother's passing still causes you so much pain. Morphine is the standard of care for relieving the suffering caused by the feeling of suffocation that accompanies end stage COPD because it works better than anything else.

This thread brings two more thoughts to mind for me:

1. It is hugely important we have frank conversation with our loved ones about our wishes. Start with drafting your advance directives & speaking candidly with your family members about them.

2. We tend to expect of dying what we see on TV. But death is a process of life just like birth. It can be messy. It can be relatively quick, but often happens more slowly. There are signs of approaching death in terminal patients. I believe understanding this & managing our expectations can take a lot of the fear out of dying. Both for ourselves & our family.

Hugs.

I took care of both my mother and my wife when they each had terminal cancer. Hospice assisted with both of them.

It was a real blessing.

Happy New Year to all!

Thank You all for your frankness and Kindness. Yes J. H. I believe that Quality and Quantity are two very different things. The reason I feel guilty about my mom is that I did not honor her by simply saying they have changed your meds mom. She had suffered long enough and she didn't appreciate everyone standing around helpless with sad looks on their faces. She was a proud woman. we named a school after her. She had been the Center Coordinator of the Headstart for many many years. /she was unable to attend the grand opening of the new school she herself designed. It is called "The McCray Childhood Learning Center" COPD and my experiences with it both myself and others has taught me to be Thankful and Thoughtful every day. My Dr. also provides Palliative Care his motto is keep moving forward one step at a time. He is entirely correct.

tillerc

tillerc, your mom sounds like an amazing woman. I can relate to the not appreciating sad looks on faces because of what I'm going through. be gentle with yourself. that was a rough time and hard to know what's best as far telling or not telling your mom. trusting the professionals, well, that's what we're taught to do. hugs.

Whow, I have been gone from here a long time, but got away long enough today to stop in.
Every comment I read was powerful and to the point. Hospice helped my nephew who was a quadriplegic for almost 20 years, go on home to his Creator . Hospice was there, and told my sister that the oxygen he was on, was stopping the inevitable. So after a family discussion, she turned off the Oxygen and he passed within 10 minutes.
tillerc, at such a time, and the grief you were going thru, you need to understand that your mom wanted to go. She took the morphine and refused all other treatments as a way to go, and the look at you may have been no more than saying good by, or thank you. You said YOU did not tell her, well if she was in her right mind, as it seems she was, I would bet someone in medical told her, other wise you could have sued the pants off them. (Not saying you would)
That was not the only hospice I was involved with out side of the hospital. My mom was on hospice and she lasted only a few weeks, but had excellent care, as did my nephew.
I hope everyone had a good, breathe easy day and holiday .and hope 2016 is going to bring miracles for us.
I get so involved with that exercise group, and my support pages, I never get over here much. Still love you and always keep everyone in my thoughts and prayers.
That last hospital stay knocked me off the "stable for almost 4 years" road, and now I am on the very low lung function road. Dr Sanchez will test me in March, (I am already 26) and we will go from there. He wants me to go back to pulmonary rehab, but they havent contacted me yet. Also I have 2 new shadows that were discovered on my lungs when I was in hospital, and Sanchez said they were real small now, and he will cat scan me in May.

Blessings to all of you
BJ

Hi Till....i agree about mother....no matter what happens in life we always have remorse, esp. when parents or children are directly involved....I lost both my parents tragically n never had the chance to say goodbye or make up for little regrets of the past...and unless you accept that all in all, they shared the real love, then you must accept that and move on....

That is why. TODAY for people like us, it is important and that's if we can, is to make some sort of peace even if it seems others do not appear willing.....

Having a ''Carer'' be it like my missus is very difficult for her, as she cannot be expected to understand our meds or our mood swings etc...For me having a Professional Person like those from Palliative, call or drop in, every once in a while is fantastic....

The point was I never knew these ''Services'' existed because my Doc never ever mentioned it to me....I guess i just got lucky after my last hospitalisation...

Bren....im too scared to get my new PFT test but i have to if i do a second round of Rehab like they want me too....I feel ive gone backwards big time and sitting on 22% is damn scary LOL

Hope it is a better year for us all,,

Peter