Hospice nurse advice

[cherokeesummer]

Hi everyone, I don't know if this is a good place to go but I really need some information and I thought maybe polling a bunch of hospice specialists would help.

My FIL is in home hospice care now. My Husband is his primary caregiver right now. FIL is 76, has small cell lung cancer (if I remember correctly). Anyway he was fine, hanging on ok and then we took him to the ER at VA b/c he was he was feeling as if he was passing out and turns out he was dehydrated so he was admitted and was there a few days. He now has a diagnosis of CHF, all treatment of chemo was stopped b/c its ineffective and he was on the last try of chemo. So he came home and was admitted to home hospice. In one day he went from being able to walk, toilet and feed/drink, prepare food, do everything for himself that didn't involve heavy lifting to now being able to do nothing for himself...how does that happen? Anyway I assume its just the combination of age and disease process but hospice gave us a list of things for impending death...and we are starting to see alot of it but we don't know if they are attributed to impending death or the tons of meds he is on...he is on duragesic, liquid morphine and tramadol (for pain) all his other meds are for other thigns...anyway the signs he is exhibiting are:

restlessness (most of the time his cannula is off, he pulls it off, his covers are everywhere and somehow last night he pulled the o2 off, his brief off and unscrewed his flashlight batteries (he keeps one beside him).

talking when nobody is there...Hubby has just noticed this.

almost zero appetite, truly if he eats more than a banana a day its a miracle. He does drink a lot - ensure, gatoraid, water, milk...but he really won't eat. On a side note, I guess we need to ask his nurse or doc if we should be trying to encourage more foods but really he doesn't want it.

He no longer even tries to use his urinal. And he has a ton of accidents a day/night...so that is really hard on hubby b/c he doesn't want to move his dad b/c everytime he moves he seems to blank out on us...its kind of scary. We are debating whether he needs to go inpatient hospice (that was an option they gave us) but we really don't want to do that...it would be a last resort you know, its just not something we want to do.

I think these are the only things...how do we know if these are related to his meds vs. death being impending...just wondering...

Maybe there are no answers...but just figured I'd try...I'm going to read a bit more on the hospice boards. I'm a new grad, my ceremony is next month but am officially now an RN applicant. Take the NCLEX in August and start working in the NICU, adult patients are not my speciality, been doing NICU internship for 6 months. But I want to offer as much emotional support to hubby that I can.

[aimeee, BSN, RN]

Those are sometimes difficult things to know even if one is directly involved with a case and darned near impossible from this distance. However, I can tell you that it is typical for end-stage cancer patients to be very disinterested in eating. Sometimes they will respond to appetite stimulants, but often they don't. You can offer frequent tasty nutrient dense foods but he isn't utilizing food in the same way anymore. In fact, for some cancer patients the addition of more calories just speeds the growth of the cancer.

You don't specify what his areas of metastasis are. We don't know how well his kidneys and liver are functioning. His poor lung function is almost certainly affecting how much oxygen gets to his brain. Does he have brain mets as well? You can't really separate terminal restlessness and confusion from medication side effects because as the vital organ functions deteriorate, the possibility of toxin buildup and drug interactions increases. If there are medications that are not related to his comfort, it might be time to eliminate them.

And yes, patients can go from being pretty functional to dependent in one day. The body tries very hard to keep itself in homeostasis and sometimes it just reaches a point where the balance is tipped and it cannot regulate itself anymore and that's it. Things go very quickly from that point.

My sympathy for all that you and your family are going through. Its wonderful that you are willing to give your FIL all this help so that he can be at home. There's no shame in saying too much is too much though if you become overwhelmed with it. Some families find they can focus so much more on being supportive to each other and the patient when they transfer the patient to an inpatient facility and let someone else take care of the physical care and medication administration. In other words, either path can be a good one.

[MQ Edna]

From everything that I've been learning, what Aimeee said is right on the money. I don't know if your FIL would tolerate it, but you could consider a Texas/external/male/condom catheter to deal with the incontinence problem. My sympathies are also extended as you and your husband go through this most difficult time. Hope you do well on your test and with your nursing career!!

[cherokeesummer]

Thank you so much, I think sometimes its just good to talk about it with someone not in the situation...make sense?

I appreciate the insight...very much!!!!

[MQ Edna]

Makes a LOT of sense...that's what I love about allnurses.com...people care enough to want to help even if it is just an encouraging word or a compasionate thought. They are also willing to share the knowledge and experience they have gleened with others. I am relatively new to this site and I have already learned so much from the postings. Please take care and keep us posted on your FIL...our thoughts and prayers are with you!!!

[ginger58, ASN, RN]

Thank you so much, I think sometimes its just good to talk about it with someone not in the situation...make sense?

I appreciate the insight...very much!!!!

What doses of pain meds is he on?

I have to agree with other posters that if his care is getting to be too stressful I'd have him go in to inpatient facility. The family can still be very supportive while there but they can go home and get some rest. Caregiving is very hard, taxing work.

[crb613, BSN, RN]

I am going through something similar w/ my dad. He went from A&O to seeing bugs, snakes horrible dreams. He could hardly speak....we figured out it was the Ativan. It is out of his system & he is Dad again! I would look at his meds.....

[leslie :-D]

i'm so sorry about your fil.

there are 3 or 4 different types of lung ca.

small cell is sadly, one of the most aggressive.

bone, lymphs, liver and brain are common metastatic sites.

the ms changes and anorexia are to be expected.

again, i'm so sorry.

it sounds like your fil would benefit from an inpt facility.

with peace,

leslie

[cherokeesummer]

Thanks everyone...let me make sure I'm answering all questions...

pain meds - he has tramadol po (pills) and morphine drops and a durageisic patch.

He is also on a bunch of other things - antidiarheal, antiemetic, diltiazem, cough syrup w/codiene, ativan I believe, something for his prostate, etc.

There is a long list of meds that the nurse and doc have listed.

I do believe his cancer is small cell but I'm not 100% sure. I wonder how do they find out about mets? It was not met when we last had a scan (about 3 weeks ago when they stopped treatment and started hospice)...so do they no longer scan to see? If that is the case how do you ever know if someone has mets anywhere?

thanks again for the input everyone!

[EmptytheBoat]

Dear cherokesummer,

Please don't worry yourself at this time with possible mets,

nothing to be done. From your origianal posting, it appears to

me that your FIL is imminently dying, and your focus should

be on keeping him comfortable. If this may be done best in an

inpatient Hospice, that is the direction you should head.

I, personally believe, that this may be done in the home setting,

equally as well, so be it, that your husband and other family members

are committed to his care. A foley catheter, as mentioned on another

post, would appear to be most beneficial. Pain is manageable with

the Fentenyl patch and liquid morphine, restlessness may be managed with

ATC Ativan/Xanax, Ativan readily available in liquid form. Oxygen would

be beneficial with no bad side effects. Appetite not an issue, forcing

food/fluid at this stage may be more problematic, refer you to http://www.crossing

thecreek.com for an excellent resource. At home, FIL is familiar with

surroundings, and loved ones more readily available, and nothing, nothing

will take away the memories and satisfaction of being there to ease

the transition from this life into the next. Take Care and God Speed!

[leslie :-D]

i can't add anything to what emptytheboat stated.

if you can manage him at home, then yes, this would be the ideal for him.

right now the goal is to keep all of you as comfortable as possible.

if his symptoms become too much, then that's where the suggestion of an inpt facility would be helpful.

wishing you strength, prayer and peace.

leslie

[cherokeesummer]

Thank you so much everyone! Yes we prefer to manage everything at home...Hubby is committed and I am too, granted I cannot do as much "care" for him b/c I am getting ready to have back surgery in a few days - I have no ability to move him, etc. but I can provide other care (emotional, etc.) and I provide the care for our son so that Hubby can focus primarily on his dad which is good.

I will take your advice and not worry about mets...I guess I just wondered how fast it would be - I don't want him hurting and miserable. He has a lot of pain but it is from chronic back problems he has had for years. He is on O2, 3L right now NC, he is on liquid morphine and a durageisic patch, also ativan as well. I can't remember what else he is on right now but I think they have done a good job of keeping him comfortable.

I will be asking about a catheter, I think that would be helpful though some days he sits up in the bed and uses his urinal but those are few and far between. He does not eat and we don't force it. He drinks a lot and we provide fluids as he requests.

Today a new problem has popped up...a bedsore. Hubby found it on FIL's lower back, right above his buttocks. This is also the site where FIL had bone grafts taken from many many years ago when his spine was fused. So its a small wound for now, red blood on the pad, no tunneling that Hubby could see (I have not gone in b/c I'm suffering a nasty cold/runny nose and I Don't want to risk giving this to FIL). We have called the nurse to come take a look at it, but I worry b/c FIL does not like to move and I know he will not allow turning every so often. Then again I have no idea if turning is advised for hospice patients...

It is so hard to wrap my mind around not being curative but being palliative...how do you change your thoughts? I guess once I've been a nurse a long time, I will be better able to change my focus from curing to comforting...but wow its hard now! :)