Hospice vs Palliative care

they also started me on 20 mg Presnisone 1 x daily, which my reg doc wouldn't give me saying it was too "dangerous"

No idea what your doctor meant by that, but here's the Prednisone link - with very long list of potential side effects / interactions with other drugs:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000091/

<clinical head on>

been looking for titrations for morphine and found so much contradictory advice...

http://dying.about.com/od/hospicecare/u/hospice_UP.htm

http://www.patient.co.uk/doctor/Pain-Control-in-Terminal-Care.htm

http://www.hospiceworld.org/book/morphine.htm

the general concensus, from what i have read, is that the dosage should be monitored 24 hourly for the first week to obtain a correct dosage...

you have such a high pain threshold so a nominal titration may not be enough to ease the pain... however, having too much too soon may not be a good plan either as the drowsiness may be too much for them/you to establish what is going to work - so they will have to increase it gradually

you must tell them what pain you're in - do you remain the painometer we talked about long ago - i wish they had invented on by now!!!!!!!!!!

morphine can be given with other medication and this is something that you should talk to the care nurses about

please ensure they give you the antiemetics and some laxatives as these will be necessary with morphine

steroids i believe may help - they will also increase your appetite if the morphine doesn't make you nauseous - and help you gain a little weight tho you need to be careful re your kidneys and all that stuff - drink plenty - you'll need that for the morphine effects too - drink plenty of water

steroids i know intimately - your blood sugars will increase - and this starts a whole other side of palliative care - what to do if these side effects happen but your quality of life is improved? do they then assist with the side effects of medication - you'll need to be specific with the hospice staff regarding what you do want and what you don't want

if quality of life is improved with pain meds and steroids, then having other meds to help with side effects should / shouldn't be administered - they will need to know - Diane will need to know

love
((((Albaturks))))

thanks, helpful information.

Perhaps they're trying to trick you with a placebo? I would confront the doctor with the lack of effect, and see what she says.

I can't imagine that such a high potency product could be replaced - with the same warnings on the label and product package - by a placebo.

I remember that mother showed similar reactions .... none the first couple of hours. (Then they gave more.)

I do notice an effect, It's not the effect I expected but then I didn't know what to expect. not unlike the steroids, the literature says it will take 3-4 days for the effect to be noticeable. I was expecting an effect in 30 minutes, like I did when I was in the hospital but surely the hospital dosage was much higher than what I take at home without medical supervision. also I am taking morphine liquid/oral whereas in the hospital it was via IV.

Whoa! Slow down, cowboy. Do you want relief, or do you want to be zonked out of your gourd? I believe that Hospice wants to determine just how much "stuff" is needed to control your discomfort. You have to start slowly, and then raise up the dosage until a comfortable level of relief is achieved.

Hopefully, the prednisone will increase your appetite. My son, when he was a little kid, had kidney disease, for which they gave him prednisone.When I came to see him at the hospital, he would be by the elevator, plate in hand. The dietitian told me that sometimes he would eat three portions.

Anyhow, I am glad that your treatment is in place.

also, it is recommended that (morphine) I take it every 4 hours, so far I have been taking it every 12 hours, as to the lorazepam, I have increased my dosage from 1.5 mg per day to 2 mg per day and it's a "take as needed" med. vital signs are very good, BP 107 over 77 and Oxygen was 97 yesterday vs 83 last friday.

wow! that IS good BP.

I'll bet it's better because you're not in as much pain?

my current issue with morphine is that it is a short lasting med, 4 hours. I would prefer good sleep for 8 hours. just have to wait and see out that works out. (slept 8 1/2 hours last night) Diane got up at 6:30, fed sally dog, gave me my morning meds then went back to bed as I stumbled into the kitchen for my morning tea.

where it gets confusing, the medical team did it's assessment and concluded that I can go without O2 for 2 minutes and can walk up to 20 feet. in actuality I often walk 40-50 feet and do without O2 for 15-20 minutes, I self-rated my pain at 3 but the team rated my pain at 7-8.

20mg/day prednisone is a high dose to start with if you have not taken steroids before - however, the hospice care staff will have taken the overall picture and your wishes into their determination of what dosage to commence with

I do hope they will monitor youregularly due to the side effects that the above dose can cause

Often steroid infusions can make a difference too if the particular need arises.

Obviously, our symptoms are very different so my experiences are not comparable at all.

The morphine I.V. in my experience kicks in immediately - leaving me a fuzzy world of "thank goodness for that" (or words to that effect, add and eff or two) but 10 mins in would mean "pass the bucket" rapidly followed by antiemetics jabbed in the thigh.

Oral morphine is far different and will not have the immediate desired effect - but it is something that needs to be managed carefully to ensure that the fuzzy world is not taking away your reality. When the time is right for the fuzzy world to arrive - you will need to make a decision then.

Lorazepaem is not a med I have taken, but one I have administered in a worst case scenario. I'm not sure of how long the effects last for - but as I take zopilcone nightly - I do know that meds such as these stay in the system throughout the day too - put in the mix with morphine (to ease pain), steroids to control the inflammation/breathing etc - I would imagine that they do not wish to increase anything too quickly without monitoring it over a number of days/weeks.

A mix of meds will eventually put the levels of pain and ability to function for weeks, months, possibly much longer - into a workable regime for you.

I can only imagine right now how much you wish to have some "steady" now that you are receiving palliative care - I wish that for you too ...

'patient' as a patient is terribly difficult to "be"

it's good that you are able to let us know how you are feeling

i hope it is useful for you to do... and for Lady Diane also... to know that we're as 'here' as we can be for you both.


((Albaquirks))

<pats Sally dawg>

Some people find it causes depression...so report that if it occurs. If you mean prednisone.

Well, in direct opposition to what Phoenix said, I am aware that pain management protocols in hospice here are often to do whatever it takes to manage pain immediately, and then come down.

This is because the more pain and distress we have been in the lower our pain threshold tends to be, and often one needs less medication once one is sure that one will be given enough.

I am not sure why you are taking less than recommended Dys? Or have they simply said you can take UP to four hourly?

I'd check that out if I were you.

But you are getting all sorts of advice here....why not check with your team?

I'm sure I'm not being clear, I asked for the morphine for bedtime and morning wakup because those are the two times I have most distress. they added that should I also need the morphine more often I could take it every 4 hours as needed.

Getting up after a few hours of not moving can be hell. I've seen times I would have refused to do it if it weren't for my nagging little bladder.

I know this is not much help to you, Bob.
I know nothing about the drugs you've been subscribed, or anything like that ...
I'm just hoping that this can be sorted out with your carers very soon & that you will finally be experiencing relief from the constant pain.
Thinking of you both & hoping to hear better news soon.

That is great. "Normal" is considered over 90. You must be feeling much more comfortable.

I guess what I was suggesting is, if you continue to have pain, that you ask them if four hourly might be better?

I just know from working a bit with palliative care here (and specialist pain clinics) that practice here is often to give MORE pain relief early on, so that pain is really well managed. The dose can often then be lowered if, as often happens, the pain threshold becomes higher as the stress of the pain and the anxiety about pain dissipates. It then becomes a balancing act between the pain and the desire for a clear head.

Of course, that is not always so, but it's a fairly well known principle of pain management that is often not recognized in "normal" medical care.

I was suggesting you talk it over with your team and see if, at least initially, it might be better to take the morph more frequently.