Unique Hospice Practice

Judi57

When talking to the hospice nurse today, I discovered an interesting fact.

If a loved one is having a heart attack or any incident needing hospital care, the caregiver must call hospice first to get permission to call for an ambulance.  They have the right to say "no."  

I understand their purpose is for comfort care, but this seems cruel.  A large part of me would not be able to live with myself if I just stood by and watch my DH suffer.

Thoughts anyone, even if your LO is not on hospice care.  And with those whose loved ones are on hospice, did you know this?

Judi

Ed1937

That really surprises me. So you can have hospice while your husband is home, but you don't have the right to call an ambulance? Just doesn't sound right, does it? I'd be interested in what others have to say on this.

Judi57

This is what I just read online.  Medicare pays for end of life stage, they will no longer pay for services that have not been authorized by the hospice team.  EMS  may administer on-site comfort care until the hospice nurse arrives.  This alleviates the need for costly transport and revoke a person's hospice benefits. The hospice nurse makes the decision since hospice is considered the PCP.

Sounds like it is a case by case situation.

June45

I understand why hospice does this; this is normal procedure. When a patient goes on hospice it is for keeping them comfortable and providing end of life care.  Most times hospice will not pay for ambulance to take a patient to the ER in the event of an accident or an illness, i.e. heart attack. They will not pay for doctors and or hospital stays resulting from such illness or accident. My husband was on hospice when he broke his hip.  I told hospice I needed to take my husband to the emergency room because he was in severe pain and probably needed surgery on his hip.  The hospice nurse had me sign papers to stop hospice services immediately. At that point my husband went back on his regular Medicare/supplement insurance.  After my husband had the surgery and was released from rehab, he was immediately accepted back in hospice. Note: hospice will pay for medical transportation when related to hospice.  They paid for my husband to be transferred to their hospice in-patient wing when he was near to death.

terei

Do some research on what the purpose of hospice is.   It is to give care and comfort. At that point, your LO generally has a DNR.   You can ignore hospice’s wishes + call for help, but the patient will be dropped from hospice.  

All this information should be clearly explained to the family before hospice is engaged.  Hospice cannot prevent you from calling, but if you disagree with hospice’s goals + rules, you should not have them come in.  The reason to call them first is so they can come to make sure your LO is NOT in pain + comfortable.

IMO death from any other reason is far better than a death from ALZ so I have no problem with their philosophy.  If your LO is in pain, they will advise you how to alleviate it (they normally have given you drugs for this when they start services for you) or arrive soon to help.  There is no need to ‘watch them suffer’

If you want to continue to medically treat your LO + you dont want them to die at home, dont engage hospice.

Pause a moment + imagine what will happen if your H has a heart attack + you call EMS. They take him to the hospital …+ give him something for pain…then what?  Intubate him? He would have to be medicated into a coma first. No?  Then what? Open heart surgery?  He is dying of dementia.  Think about the consequences of hospital care for a PWD.  Think about what it will do to THEM.   A dignified + calm death is all any of us can hope for + usually, that’s not the case stuck full of tubes in a hospital bed

JJAz

Judi,

You received bad information.    You can revoke Hospice at any time.  If you go to the hospital against the advice of Hospice, you are rejecting Hospice care and Hospice won't pay for the hospital stay (sometimes, there may be situations that Hospice approves of the hospitalization, and they will pay the bill.)  Make sure that you properly stop Hospice care if Hospice doesn't approve of your hospitalization and reengage Medicare part A if you want Medicare to pay for your hospital stay.  You cannot simultaneously have both services.  You may or may not be able to reengage Hospice after your hospital discharge.  Always remember that the ability to get medical care and who is going to pay for it are two different things.

Jamie

p.s. I'm unsure if you can have Medicare part A and VA Hospice simultaneously.

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elainechem

This is what happened when my husband was on hospice: I was told to call hospice before I called 911. They were on call 24/7. 8 days before his death, my husband had a seizure which resulted in a serious fall. He broke both shoulders. I called hospice. They sent out the nurse to evaluate the situation. They sent out an x-ray technician who determined that he had dislocated his right shoulder. I was told that, if he went to the hospital, Medicare wouldn't pay for it under hospice. HOWEVER, they did pay for it under regular Medicare. After I learned how extensive his injuries were and I decided against major surgery, he was transported back home via ambulance. The hospice nurse and doctor came within a couple of hours and recertified him for hospice. He died four days after he got home. 

The moral of the story is that Medicare will pay for hospice and hospital stays, but not on the same day. It's a little confusing, but he never lost coverage. I had to send copies of his death certificate to the hospital and the orthopedic surgeon, but I didn't have to pay for anything. 

zauberflote

Both my mom (hospice for dementia) and MIL(for COPD) were on hospice, and yes, we all knew that aspect. Both women went off hospice for periods involving admission to hospital. MIL for a horrible bout with cellulitis, which the hospice nurse told us could lead to septicemia which was an awful way to die , and Mom for a sheared femur. The hospice nurses were a strong part of the team that helped us finally decide to replace Mom's hip as she valued her walking so highly. They both had "hospital DNR"s, and they both were admitted back to hospice the minute they crossed their home territory thresholds. Note for my mom: as she was nearly 92 and very frail, her chances of surviving the surgery were not as good as they might have been. We were prepared for her to die during surgery, but she came through very well. 

One thing we made clear with Mom's MC and hospice was that a choking episode did not constitute dying. If she choked on food, they (including the hospice nurse) would administer the Heimlich maneuver. If, on the other hand, Mom was unresponsive one bed check, and they found no heartbeat, she Was Not to be resuscitated. If she had not been on hospice, MC would have been legally bound to call EMS, who would be legally bound to attempt to bring her back, crumbling all her ribs in the process. Not what anybody wanted. 

Paris20

In 1996, when my Dad was under Hospice care, the rules were very clearly explained to us. I think that among the reasons that patients and their loved ones are hesitant to sign on the bottom line for Hospice is that they don’t want to accept the six-months-to-live statement as well as the notion of palliative care. It’s that fear and/or denial of death. Our culture sees it as weakness, giving up. 

My mother, age 100, is currently under Hospice care. She has a 24/7 caregiver whom she pays for but also has a Hospice nurse checking on her frequently. A Hospice physician is available for consultation on Mom’s care. Hospice pays for much of the basic equipment that my mother needs, e.g.,hospital bed rental, commode, etc. We understand what will and won’t be done for Mom. The bottom line is to keep her as comfortable as possible. 

dayn2nite2

My mother had a heart attack on hospice.  I specifically told them no hospital, no ambulance.  She was no suffering.  She went into a coma and died 3 days later.

If you would consider intervention for cardiac problems, you may not be ready for hospice.

Pam BH

Agree with all the replies of those who are knowledgeable about Hospice. If your loved one has a DNR and you intend to follow it, you should be ready for Hospice. DH has been in Hospice for 2 weeks and everything was very well explained. After finding out he had been chewing all his medications and some are time released we switched him to the liquid comfort meds provided by Hospice and he's doing surprisingly well. Some things we can call 911, e.g., lift assists, broken bones, etc., but first call Hospice 911 to make sure things will go as planned for billing, etc.  He's not eating or drinking much and if that continues he's probably day to day or week to week. Hospice has been wonderful.

Judi57

Thank you for those who took time to respond.  I'm sorry I bothered this group with what I thought was just an observation of something the nurse had explained.   It's a learning experience for me.  I've adapted to so many other changes in him;  I will do so with this one too.   

Ed1937

Judi57 wrote:

 I'm sorry I bothered this group with what I thought was just an observation of something the nurse had explained.  

Judi, I think it was very clear in your original post. Absolutely nothing to  be sorry for.

MaryG123

Please don’t be sorry Judy57!  This discussion was very helpful to me, and it’s obviously a complicated issue.  Thank you for bringing it up.  Years ago, my mom had a major stroke while I was visiting her and my father and I called hospice.  While waiting, he panicked and dialed 911, which triggered just the kind of treatment she didn’t want.  I didn’t have a copy of her dnr order.  After a week on life support he finally agreed to let her go.  Had I known then what I know now, I could have prevented that situation from happening, and she could have passed peacefully at home with her loved ones.

Jo C.

Hello Dear Judi, you certainly did not bother anyone at all; not even a little bit.  This sort of discussion is part of what we are all about in our support.  Your thoughts and concern are spot on considering being new to Hospice after what the Hospice RN shared with you.   Hospice is NOT always a black and white set of options in all circumstances; you are not the only one having concerns regarding this.  Sometimes things happen in an unforeseen manner and also, we are all different.  Hospice does indeed honor this sort of thought dynamic as it is something that comes up with clients.

If one has a situation arise where one strongly feels that it is a situation that needs an ambulance transport to the acute hospital to the ER: then one can certainly do that. However; if Hospice has not been involved to authorize that service, that means that at that point that Hospice may well not be the payor for that service - regular Medicare would then become the insuror.  This sort of dynamic has upon occasion happened with some of our Members. While it means that Hospice is dropped for that short period of time, they can once again resume being on service once the patient returns home even if it is in the very same day. There will be an assessment and some paperwork by Hospice staff in order to resume their service.   I have not heard of anyone being refused Hospice to once again pick up service, however, you may want to ask that question of your Hospice professional to have it clear in your understanding.

I know that if my LO suffered fractured bones or other type of intense need causing miy LO great distress, there is no way I would wait hours for my LO to receive adequate medical care while waiting for someone to come to the house to do an assessment.  But that is simply me and of all things, I am an RN; a Director of Patient Care Management who also had a consulting business and did quality monitoring of Home Health and Hospice for large medical groups in my professional life.  That sort of decision for myself does not mean I am right; not at all, it just means that is my own personal situational belief and I have had two LOs on Hospice service.

If my LO were in an imminent dying situation where death was occurring in the here and now; not in months, my decision making would be different. What is right for one person may not be the choice for another and that is to be respected.   Just be sure to clarify your understanding with Hospice.  As often mentioned, some Hospices are more beneficent than others. If you do not feel clear, you can contact the Hospice office and ask to speak to the Director to gain more clarity.

You are fine and you are doing the very best that can be done under very challenging circumstances while experiencing new dynamics for which you have no experience or knowledge and you are striving to do the best you can; what a blessing you are to your Loved One.

Let us know how you are doing; and may Hospice be a good help for your and your beloved husband.  I will be thinking of you,

J.

jfkoc

Judy 57...your post allowed us to learn more about Hospice. Thank you.

Judi57

Thanks, Jo.  Your kind words made me feel better.  

The information I received was just one of those "wow" moments as I was learning about the hospice program.  For the past five years, I have made all decisions about his medical care, our finances, upkeep of the house, selling his truck, etc.  A one person show while still trying to keep my own sanity and health issues in check.  

My DH would be the first person to tell you I love being in control.  So doing all that was not really an issue.  And then to learn that I need to call hospice first left me feeling as if I'm no longer in control.  

As I said, it will just have to be something about which I will need to adapt.  My husband probably is ready for hospice.  Me...well time will allow that to happen too. 

Jo C.

Most of us in our caregiving have to or had to, through necessity, needed to be "in control," as to not be led to time consuming and sometimes dire outcomes.   Been there, done that.

Letting loose of control when programmed for it through all that we must do as you mention in your Post on so many levels for so many things in multiple areas, is so very uncomfortable. I always researched until Google should have sent me a bill and my eyeballs were nearly crossed.  Control is needed just to keep one's head above water.  You should have seen my notebook tracking for all and sundry.  Geeze.   Knowledge is power and boy; I sure did search for knowledge.  Still do.   Otherwise, it is like working in  the dark.

Upward and onward one foot in front of the other. 

J.

ImMaggieMae

Thank you for posting your question, Judi. Although we’re not at the point of Hospice now, it’s a little unsettling the way it works. I don’t like not being in control either. I want to do everything I can to protect my DH, even when I can’t anymore.  But thank you to Jo C for the clear explanation of how these things work.

sandwichone123

I have a little different take on the loss of control. To me, making a plan ahead of time allows for control, while having to make a plan on the fly in the presence of an emergency situation when emotions are high is chaotic and out of control. I would actually be grateful for the opportunity to "ink in" a plan ahead of time.