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Advice needed regarding Hospice

Posts: 757
Joined: Apr 2012
My husband decided a year ago, exactly, to stop all treatment once we found out that his cancer had spread.  Laryngeal (radiation, chemo and surgery).  Then a second primary at the cervical of his esophagus (radiation and chemo).  NED for 4 months then cancer back at the cervical of his esophagus and spread to his right lung.


In September he decided, after our oncologist recommended, to go on hospice.  While hospice has been great and we have had no problems, we are trying to decide whether to stay on hospice or come off.   Something you can do.  His condition is not much different than one year ago.  Oh yes his pain level, energy level, desire to do anything is muchless, plus weight lost.  But he is not bedridden, no breathing problems that require oxygen, is able to take care of himself and when he feels like it does some yard work, works on things, etc.  He doesn't drive anymore because of the pain medication. 


Yes hospice provides everything that is needed for his cancer, pain medication, tube feeding nutrition and general supplies as long as it deal with the cancer.  And no we don't have to pay for anything but yet when I see what Medicare is charged and what is paid it makes me wonder what hospice is doing for this type of monthly charge.  And yes I realize things could change overnight.  Of course, he has to be recertified this month for the next 2-3 months but we were told that due to him being classified terminal cancer there isn't a problem. 


So, if it was you or your loved one, what would you do?  Thanks for all help -- Sharon


longtermsurvivor's picture
Posts: 1845
Joined: Mar 2010

My first thought is that you not look at what is charged and what is paid.  Those numbers are enough to make you crazy.  It is wonderful he has done this well.  But you know that more services will eventually be required. Hospit for sure, and perhaps respit for you, if it comes to that.  I don't personally know how much paperwork is involved in moving off of hospit, and later back on.  And I'm not sure what the advantage to you guys would be from being off of hospit right now.  If you do move off, then you are back to alacarte medical care, which will be a pain in the rear for you perhaps.  I'm just kind of rambling here, lol.  I guess my main point is I wouldn't let any thoughts of saving money for "the system" to cloud my thoughts on this.


best to you both



Posts: 1914
Joined: May 2012

This is a good question.  And one many never have to consider.  If you're with a good hospice program, I would continue their services.  The one we used with our Mother was excellant.  Mom and Dad had the option to pick and choose which programs within their service to use.  And being old school themselves it was not many.  But saying this it was of immense relief for her main caregivers at their home, just to know they were a phone call away.  (myself included)

And yes Mom was on the program for 2 yrs.  And was recertified by her physician every six months.  (Mn. and federal rules)   Sharon, I hope you continue to use these valuable services.  Hugs sent !  Katie

Whether I decide to stay at home, or move into a care center I will be using Hospice.  I think that for my family it is a wonderful gift of love.  my own ideas. 

donfoo's picture
Posts: 1644
Joined: Dec 2012

Hi Sharon,

Simple answer - Use their services as best suits your desire and need.

The typical situation with hospice is clients engage them while nearing the end of end of life. Many do not know you can reach out to hospice at any time and they will review and discuss your request for service. I think there is a set of criteria that generally needs to be met to receive their services on a formal, regular type schedule. As you mention there are a variety of services from which to engage depending on your need and desire.

Although my Mom was serviced in the typical manner, my understanding is you can engage them and use them on an as needed basis to suit your need. Just ask them how to make such arrangements. How the paperworks I have no idea as to your formal status if you decide to use them in such a case.

Lastly, do not look at how the paperwork gets shuffled around between agencies. You need to focus on ensuring you obtain the services you  need and desire and as long as the cost of care is covered, let it go. During my care, I did dig into the Medicare rate schedule as a benchmark to what actually gets paid (real dollars) and it was completely a sham to see all the layers of BS billing on top of that with their inflated and rediculous and unjustified rates and invoices. It not only drove me crazy but mostly just pissed me off.

Best to you,


PJ47's picture
Posts: 375
Joined: Sep 2013

by your Hospice staff and his pain is being managed well, then consider keeping his Hospice beneits as is.  Having worked in Hospice for over 15 years, my 2cents is some folks require daily support and intervention at home, some 24 hour intensive in-patient care,  and some if they have good support and the pain is managed, occasional visists and checks.  It is geared to your wishes and needs which can change quickly.  It is a blessing that he is able to manage as well as he is currently.  You need not worry about deductibles, co-pays and such with the hospice benefit which can be an extra stressor at a time like this. It is a benefit well deserved.

Take care,


wmc's picture
Posts: 1792
Joined: Jan 2014

I would say to stay on it, if it is working. It is supose to take the stress off you as well. Things can change so fast and to get it reactivated will put so much stress on you both at a time when you don't need any. Thats why it is there.


hwt's picture
Posts: 2330
Joined: Jun 2012

I do know that hospice is not the way we used to know it. A person can go on & off of the hospice program as needed. If you think it would help your husband's state of mind, you might want to give it a go on your own for awhile. Of course, talk to hospice about the pros and cons before making a decision.

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

Well I have been questioning myself whether to call in hospice now or wait for doctor to say it is time. My husband, like yours, chose to not have any more treatment after learning his cancer had spread to the lungs. He almost 2 yrs with no problems. However, this past two months the disease has progressed rapidly. This past week we have been to three doctors and I have been on the phone everyday with insurance and doctors trying to get pain meds and breathing help. Tonight I am worried his pain meds will run out over the weekend because his pain is increasing and he needs them more often. All this is to say that as the caretaker and his wife, I could use some relief so my time with Jim is not spent trying to relieve his pain or calm him down because of all the phone calss and frustration I am going through. I would not let hospice go as I know how quickly things can change.


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