How do you know if it's time for Hospice? (update post #25)

[minniecarousel]

My dear Mom is 93 and has been in the hospital since Sunday. She got severely dehydrated due to persistant diarrhea. Her potassium levels were "dangerously high" and her white count went up. Most things are back to normal, except her heart. She had cardioversion done last Friday because of atrial fibrillation. Her blood pressure dropped to 71/49 yesterday afternoon and again this afternoon.

When her primary care doctor saw her on Monday, I asked about Hospice and he claimed that she wasn't in the category of "6 months or less". Of course, he said she could go home today, after the cardiologist saw her. Thankfully, HER cardiologist was the one making rounds today and said she wasn't going home. He felt that she wasn't stable, heart-wise.

She's been so fatigued for several months. She says her arms and legs get so tired when she walks with her walker. She wasn't even dissapointed that she wasn't coming home today. She just wants to sleep. She will cooperate with PT & OT, when they come into her room, but she's so tired.

I hate seeing her like this. So much of the joy has gone out of her life. She used to go out to lunch with my sisters on Saturday. She would read and listen to CDs. Now, it seems she just sleeps.

Anyone with Hospice experience - is she a candidate? Just because she's tired, that might not mean her heart is ready to stop? I'm just so confused.

 

[golfgal]

Technically yes, she is supposed to have a diagnosis of 6 months left to live or less. I would call the local hospice and see what their procedure is. Do you have a residential hospice house or would you do it in your mom's home or what?

I think you also need to chat with her dr more--maybe not during rounds but schedule an actual meeting with the doctor and find out exactly what is what. Is your mom being up front with the doctor about her symptoms?

 

[Judy from Boise]

I think the DR is correct, your mother does not have a terminal illness. However, there is never an obligation for her to consent to treatment, if she want to go home and just sleep, even knowing it could lead to death, that is certainly within her rights. Many states have a "comfort one" program where people can go home, and if needed call the paramedics for some support treatment , and not obligate the paramedics to take her to the ER.
Or if you stay in the hospital, you could switch her to "comfort measures only" but that is usually for people actively dying.

 

[SandrA9810]

Sounds like your mom knows more than what she's leading on. There might not be any significant signs to say she will pass within the next 6 months, but sounds like she knows it's around the corner. Maybe it's her way of trying to pass peacefully.

My grandmother is 83 with dementia. And she's constantly fighting the doctors, fighting with my aunt every time she hands her the medicine. When I went out last time and she had a TMI (mini stroke/seizure), she constantly said she was fine, nothing was wrong with her. But couldn't remember anything that caused her to wind up in the hospital, and constantly thought she was at home. So we know something's going to happen (I think in the next couple years at most), but don't really know when.

 

[mefordis]

Is she getting plenty of fluids? The lethargy might be due to dehydration. Severe dehydration can shut down the kidneys. Is she in a good hospital? Are you confident in the care?

God bless.

My dear Mom is 93 and has been in the hospital since Sunday. She got severely dehydrated due to persistant diarrhea. Her potassium levels were "dangerously high" and her white count went up. Most things are back to normal, except her heart. She had cardioversion done last Friday because of atrial fibrillation. Her blood pressure dropped to 71/49 yesterday afternoon and again this afternoon.

When her primary care doctor saw her on Monday, I asked about Hospice and he claimed that she wasn't in the category of "6 months or less". Of course, he said she could go home today, after the cardiologist saw her. Thankfully, HER cardiologist was the one making rounds today and said she wasn't going home. He felt that she wasn't stable, heart-wise.

She's been so fatigued for several months. She says her arms and legs get so tired when she walks with her walker. She wasn't even dissapointed that she wasn't coming home today. She just wants to sleep. She will cooperate with PT & OT, when they come into her room, but she's so tired.

I hate seeing her like this. So much of the joy has gone out of her life. She used to go out to lunch with my sisters on Saturday. She would read and listen to CDs. Now, it seems she just sleeps.

Anyone with Hospice experience - is she a candidate? Just because she's tired, that might not mean her heart is ready to stop? I'm just so confused.

 

[jme829]

My 90 yr old grandma just went to Hospice this past Thursday...She is in the "final" stages of congestive heart failure. She's in Ohio and I'm in Wisconsin, so I haven't been able to go see her, but from all accounts from family postings on facebook, so far she is doing fairly well.

I don't know how exactly the decision was made for her that it was time, but I know there was a meeting with her, family and doctors, and that she requested it and is at peace with being there. I would assume the doctors told her she qualified, I know they told her there wasn't anything else that could be done that wouldn't be a HUGE risk.

For us, its now just a waiting game. No one really knows how much time she has, but so far she is getting lots of visitors and making the most of what she does have.

 

[minniebeth]

Often, a dr. or a social worker in the hospital will need to make the recommendation. Then it goes from there, with the consent of the family. There is certain criteria beyond just the 6 month rule of thumb. There is also "quality of life" hospice in certain states/areas, perhaps you could look into something like that.

 

[Disney Doll]

I would ask at the hospital if thye have a "palliative care" team. Palliative care is sort of "pre-hospice" if you will allow me to make up a word. Palliative care looks at the whole picture, talks to the patient, talks to the fmaily and makes care recommendaitons based on all of the above. Palliative care people are really good about fleshing out the patient's desires and getting everyone on board with them.

I'm kind of puzzled how her potassium could be high with diarrhea unless her kidneys are starting to fail. Usually diarrhea results in low potassium.

I don't know what your relationship is with her primary doctor, b ut do keep in mind that sometimes doctors' personal beliefs will "color" their perceptions about end of life. And no they shouldn't and all the arguments people will give me, but the fact is, they do. I am acquainted with MDs who have a hard time letting people go...and I don't mean hastening someone's death, but just doing comfort measures and letting nature take its course.

I am a bit surpirsed your mother's primary MD doesn't think she's got 6 months or less...just a low BP like that in someone her age could have a huge impact.

If you are pretty well convinced that her care has been good, she has been well-hydrated, they have ruled out a bacterial cause for the diarrhea (c.diff is usually the culprit), then I'd think twice about putting her through a lot of invasive procedures. 93 is a good long life and it's OK to go.

...I know it's hard....

 

[DVC~OKW~96]

What does she want to do? Treat the underlying cause of the tiredness first. Being dehydrated wreaks havoc on an older body and she will take time to recover from that.

Also, be absolutely certain they've got the potassium levels corrected.

Once all the actualy physiological issues have been taken care of, then you can look at what she wants and come up with a plan.

Remember, going to Hospice will mean that she is comfortable with refusing any future treatments to improve her condition. She'll have to disenroll to undergo certain tests and interventions.

Try to find a good geriatrician. That discipline will do much to help you understand the aging body.

Best wishes for her health, and to you too.

 

[Tinkerbelle's Mom]

Op my heart goes out to you.

As for if she is Hospice ready - that does need to be determinded by an MD. The hospice I work for requires an MD to make a referral to our agency. Once we have that referral our admiting nurse goes out to visit the patient and family to discuss hospice and what it means. Our medical director will also help determine if a patient is ready for hospice.

I would contact several local hospice agencies and talk to them about your mom.

 

[DebbieB]

When my mom was in liver failure from breast cancer that spread there, the doctor was one the who said it was time for hospice because there was nothing more he could do. She ended up dying about 10 days later, it was very quick. Hospice really helped us. Anything we needed they would deliver to the house. They sent a counselor to talk to both me and my mom. They sent a nurses aid to bathe her. When she passed, the nurse came to the house and called the coroner to release her direct to the funeral home and then called the funeral home.

 

[minkydog]

I am a bit surpirsed your mother's primary MD doesn't think she's got 6 months or less...just a low BP like that in someone her age could have a huge impact.

If you are pretty well convinced that her care has been good, she has been well-hydrated, they have ruled out a bacterial cause for the diarrhea (c.diff is usually the culprit), then I'd think twice about putting her through a lot of invasive procedures. 93 is a good long life and it's OK to go.

...I know it's hard....

You know, these little old ladies can surprise you. My 89yo MIL has been acting like this for 2 years and shows very few signs of giving out. She lives in a nursing home and her days revolve around her naps. SHe's up at 5am to "get ready" for breakfast at 7:30. Then its back in her jammies to sleep until 11am when she rises to "get ready" for lunch. Then back in the jammies to sleep until supper...and you get the drift. She goes to bed as soon as supper is over and stays there until she wakes up at 3am. MIL likes to read, but watches no TV, does not participate in any activities in the LTC, and doesn't want to visit with anyone except her son and daughter. She is frail, weak and wobbly, can barely walk anymore, and has a hard time doing her own self-care. Her mind is still sharp and her hearing is excellent but shes having a hard time staying a conversation anymore. All she really wants to do is go back to bed. I know she's depressed, but you know? She's 89,in her right mind. No one can force her to do anything about it(and we've all tried.) Who knows how long she can go like this? I thought the broken hip 2 years ago would do her in, but shes just a crusty little thing. Just don't forget her evening toddie and nobody gets hurt!

 

[minniecarousel]

OP here - Thanks for the insights. I'm sure I'm just venting. It's so frustrating seeing her like this. She moved into our home almost 10 years ago. In fact, DH & I moved to a home with a bedroom and bath with shower on the ground floor, just so she could move in here (the house we raised our sons in was a tri-level and the stairs were hard on her knees.)

She is always in some level of congestive heart failure & has "chronic kidney disease, stage III, moderate".

HA! minkydog - thanks for another viewpoint. See, this is what could very well be going on with her!

I love her dearly and just want her comfortable.

 

[ZeitgeistDuck]

OP, my heart goes out to you.

I've been through this twice. With my mom, she died before hospice got started, we made the decision to remove vents and tubes and she died within a few hours. With my dad it was a few weeks.

It sounds to me like she doesn't have a diagnosed terminal illness, so that might be why her doctor wouldn't recommend hospice. It might help you to talk to the hospital's social worker to get more information about the criteria for hospice and what the benefits are. If your mom goes home, what kind of care will she need that hospice will provide.

As far as the decision of when it was time to stop fighting... I had some great doctors, nurses and social workers that helped me. The best advice was - you always do what the patient wants, but also do as much as you need to do so that you won't have doubts you did the right thing after it was over. Neither of my parents were in a position to make the decision for themselves, so I tried to always do what I thought they would want... but I also kept pushing until I felt like I could let go without guilt.

In the mean time, if your mom wants, she can sign a DNR and get and advanced directive going so that even if she is not a candidate for hospice you've moved toward palliative care.

 

[jstbcuz]

My grandmother had a heart attack in June of 2007. She had lived at home by herself and was 90 I believe. After her HA, the dr said she no longer could live at home, so we put her in the nursing home. She got on HOSPICE and had a lady come visit a couple times a week. Soon she got strong enough to move across the street to the assisted living center.......and continued to recieve support from Hospice......She lived there until April of 2009 and was on Hospice the whole time.

In April of 2009, my other gma fell and broke her hip and arm........was admitted to the hospital and died several days later. When we told my gma that was in the assisted living she said "Ive lost my best friend.....I can go now too" And hospice brought in a hospital bed, she didnt eat much before, but pretty much stopped eating, and she slept alot. It took 12 days before she passed away. Our hospice nurse wasnt there when she passed, but after the call drove 35 miles one way to come be with us, call the funeral home, and they cleaned her up before the funeral home people got there.

 

[Disney Doll]

OP, my heart goes out to you.

I've been through this twice. With my mom, she died before hospice got started, we made the decision to remove vents and tubes and she died within a few hours. With my dad it was a few weeks.

It sounds to me like she doesn't have a diagnosed terminal illness, so that might be why her doctor wouldn't recommend hospice. It might help you to talk to the hospital's social worker to get more information about the criteria for hospice and what the benefits are. If your mom goes home, what kind of care will she need that hospice will provide.

As far as the decision of when it was time to stop fighting... I had some great doctors, nurses and social workers that helped me. The best advice was - you always do what the patient wants, but also do as much as you need to do so that you won't have doubts you did the right thing after it was over. Neither of my parents were in a position to make the decision for themselves, so I tried to always do what I thought they would want... but I also kept pushing until I felt like I could let go without guilt.

In the mean time, if your mom wants, she can sign a DNR and get and advanced directive going so that even if she is not a candidate for hospice you've moved toward palliative care.

This is a good post! Good advice...

And I do know that the little old ladies can surprise you about they will hang on, but I guess my concern isn't so much how long she'll hang on as it what happens the next time something happens? If she gets short of breath from the CHF and the ambulance is called and she goes to the hospital, then what??? I guess my question is "extraordinary measures"...in minky's MIL's case, her day to day is fine, albeit a lot of sleeping involved, and I am assuming she has some kind of advance directive in place which says that if one day she doesn't get up to get ready for lunch, nobody's going to be doing CPR, putting her on ventilators and all the associated things which are always SO much more invlved than what we see on TV, which is where most people get their medical information from.

People have this thought (not saying you, OP, or you,minky) that "comfort care" or palliative care means no care. It doesn't mean that. It just means that we maintain the status quo, don't do anything horribly invasive and allow the patient to live comfortably the way they want (a la minky's MIL) and help them maintain their best or desired level of function and lifestyle.

I'm there with you, because I have an 84 year old mother and an 82 year old father and they have made it abundantly cclear that they do not want machines, a lot of intervention or anything else. They both feel that they live good lives now, they have lived a long good life and accomplished what they have wanted to accomplish and they are "ready" when the times comes, to let go. And truthfully, in my work as a nurse I have seen too many elderly people being stuck with needles, feeding tubes, breathing tubes and every other sort of thing that they are never going to be able to come out of with any remaining quality of life, and it's cruel, frankly.

 

[minkydog]

This is a good post! Good advice...

And I do know that the little old ladies can surprise you about they will hang on, but I guess my concern isn't so much how long she'll hang on as it what happens the next time something happens? If she gets short of breath from the CHF and the ambulance is called and she goes to the hospital, then what??? I guess my question is "extraordinary measures"...in minky's MIL's case, her day to day is fine, albeit a lot of sleeping involved, and I am assuming she has some kind of advance directive in place which says that if one day she doesn't get up to get ready for lunch, nobody's going to be doing CPR, putting her on ventilators and all the associated things which are always SO much more invlved than what we see on TV, which is where most people get their medical information from.

People have this thought (not saying you, OP, or you,minky) that "comfort care" or palliative care means no care. It doesn't mean that. It just means that we maintain the status quo, don't do anything horribly invasive and allow the patient to live comfortably the way they want (a la minky's MIL) and help them maintain their best or desired level of function and lifestyle.

Nope, no advance directive for MIL. I wish. She (and her daughter) want to pull out all the stops no matter what. I don't say anything because I"m only a DIL and it's a sensitive subject. DH & I have talked about it and we agree that someone of age, in poor health(and she does have health problems) should not be subjected to heroic measures at the end of their life. DSil is not a medical person and she has no idea what heroic measures entail nor how awful and painful they are. She doesn't even entertain discussion about it and MIL sure doesn't. She's a stick-your-head-in-the-sand kinda woman all the way. At the end I'm sure they'll be pounding on her chest until they break all her ribs and shoving endo tubes into her trachea to rack her lungs with a vent until the bitter end.

I am all for palliative care. DH has severe, disabling lung-heart disease. He has an advanced directive and has made it clear that no heroic measures be taken in the event of his imminent death if there is no hope of recovery to good quality of life. We're both fine with that but you should have heard the outcry from his family! They just don't get it.

 

[minniecarousel]

She has a DNR & we (her daughters) are all aware of her wishes.

Of course, I wasn't at the hospital this morning when the cardiologist on call came by to see her. Thankfully, my niece was there & able to fill him in. Mom's not too sharp in answering questions these days. He says they can't figure out why her potassium levels keep dropping, which is wierd since when she was admitted her levels were "dangerously" high.

I don't think she's coming home this weekend. There will be a time to ask her cardiologist the hospice question later on. She may very well not be at that point. It's hard to tell until she gets a little better and her meds get figured out.

 

[beachbunny]

Haven't read the entire thread. I've had a lot of experience with this recently. Hospice is for end of life - six months or less to live and can't perform 2 of 5 daily functions by self including, feeding, bathing, etc. If she doesn't qualify for hospice, you may consider a nursing home.

P.S. - You'll know when your loved one is ready for hospice. It was very clear to my family.

 

[sTINKS]

I recently had hospice care in my home for my brother, who died of cancer. Hospice was very helpful to me, but I had to seek it out and ask a lot of questions. I recommend calling a couple of Hospice providers and talking with them directly. They can explain best what they do and when, If you find that this is not the time, you will have a good idea of where to turn when you need it. Find a hospice provider you are comfortable with.

Good luck to you. Watching someone you love slip away is not easy.