Hiv-aids

[thevicarofblue]

As I said in one post, we've been living out of the US for over 3 years. I sort of became the "unofficial" hospice nurse and chaplain for a great many people of many ages, genders, and cultures. I saw soo many women and children dying with HIV-related illness; it broke my heart. Not to mention living in an "honor and shame" society that ostrasises AND denies GLBTQKQ folk. There was soo much other stuff involved like there being only one clinic with AIDS meds and the deliveries were intermittent. Many folks with AIDS and HIV chose NOT to take meds b/c they were not consistently available nor were there ever enough meds. It was beyond "the First Wave" in the US all those many years ago.

I mean I'm not concerned about neighborhood, area of town, etc. My dream priest job is in the S Bronx where one can rarely even get a taxi to get there.

Any information is appreciated.

the vicar of blue

Just wondering what is going on with HIV-AIDS in terms of hospice care today.

[doodlemom]

We have seen a recent (in the last 2 years) influx of HIV patients that are no longer responding to the newest drugs available...but the majority of our HIV patients are those who have been out on the street and have not been on treatment or their treatment is very inconsistent. We pay for any of their preventative medications and on occasion will pay for their antiretrovirals on a case by case basis. Because the majority of our HIV population have come from the street and/or have a drug problem, this can be challenging. Many get back on their antiretrovirals and get better for a while - go off of hospice and then go back to not taking care of themselves and then bend up back on our service (this can sometimes result in multiple admissions for the same patient.) With all of these patients, we see a plethora of opportunistic infections, neurological symptoms, dementia - you name it - so each patient's hospice needs are so individualized. You are probably seeing a lot of the same symptoms that we see here but I think the hardest one to treat is the diarrhea. I've gotta run off to work now, but will check in later.

[leslie :-D]

i find end-stage aids, to be some of my most difficult cases.

their meds can be complicated:

fatigue, pain and anorexia/gi disturbances, make it a never ending battle.

even the eventual inability to swallow their meds (r/t esophageal fungal inf) has you either dc'ing meds or changing to iv (if there's a decent vein left).

ravaging lesions, resp infections, neuro deficits and neuralgias...

it never stops.

rather, it multiplies and takes control.

on top of all the physical barriers, is the depression, isolation, hopelessness.

and of course, the stigma of having aids and many dying alone.

and if i feel this overwhelmed, i can't even begin to imagine what these pts have to live with...

and die with.

truly, one of the most devastating diseases i have ever seen.

leslie

[thevicarofblue]

Are you following your HIV/AIDS folks literally "on the streets" or are they hospitalised in a hospital with "hospice beds" or placed into a hospice house or a nursing home with hospice beds or what?

Thanks so much

blue

[thevicarofblue]

Are you using a compounding pharmacist? When I did hospice, a genius, famous, gifted, creative compounder was "creating" stuff that does not exist for ALL of our hospice clients. We nebulised MS; we used shark cartilage suppositories; we used marinol po and topically in PLO, a gel that allows the skin to work as a vehicle almost as quickly as iv/SL. we RARELY used IV's and then we used subcu for IV pain control and, as I said, IV's were rare. We used liquid fast acting and flavored to the pt's choice, long-acting MS suppositories or po, and topical MS. We used HABR or ABHR for nausea; I know this was compounded in po and suppositories; and we used TOPICAL ABHR (Ativan 1mgm/Benadryl 50 mg/Haldol 1mg/Reglan10mg topically; and of course, as I said we nebulised MS.

Then there was "Marty's Rectal Rocket" a 3 day specialised and individualised suppository for hemorrhoids; I've never known ANYONE who actually needed more than 2 nights to "cure" hemorrhoids. Saved many people discomfort and even hemorrhoid surgery. The "rectal rocket" was used by as many hospice folks as non-hospice folks.

There were a few PIC lines for specialised clients but, again, that was rare as it is expensive, rarely necessary, and then everyone focuses on "the machine" vs the person in the bed... and for subcu MS, Dilaudid, MS with compazine using a PCA-CADD 5400. We all loathed fentanyl because it's metabolising to anti-psychotic compound AND because it's so difficult to monitor and treat increased pain, takes a long time to work and because one of our PCG's tossed the patch in the garbage can and a CHILD got a hold of the patch and, thank the Goddess, someone noticed and we all lived to tell about it!!

Compazine gel, Haldol gel for agitation, Ativan SL or topical if compounded--used Ativan concentrate (can't remember if this could be flavored or not); Dilantiin gel for decubiti; modified Dakins' solution for decubiti; for "smelly" wounds, modified Dakins' solution too. Our compounder made our Scopalamine in gel form--then, there were many times the patches were not available. The list goes on and on but this is all I remember, I am sorry to say.

The PLO gel could be used, oftentimes for many many meds. Now compounders are using PLO as well as "hydrogels"--I don't know if they work any better than PLO. My husband created PLO, gets no money for its creation and WANTED no money for its creation, he just wanted people to use it. The hydrogels came after he went to seminary (98) and the only compounding he did then was HRT's and meds for non-humans, so I'd have to ask the good compounders who do hospice work what they are doing and why.

For KS--gancyclovir. I've not seen people with KS in a long time so I don't know if this is still an HIV reality or not. If KS is still out there, then there very likely may be newer and better meds compounded creatively.

For fatigue, we used amphetamines orally. I don't know if they can be compounded in any creative way.

Marinol and periaction--topically, orally, tabs, or liquid for nausea and poor appetite. We used a bit of Megace now and then for folks for whom it worked. Of course we turned our heads when clients were using the REAL marinol as it DOES work better. NOW in states with legalised MMJ, that's not the issue it once was, thank the Holy One of Many Names!

We used alternative meds and treatments, too, like acupressure, acupuncture, magnets. Some folks, depending upon culture, used the assistance of their cultural healer from Santeria to shamans to whatever their traditional/cultural healers used--including US aboriginal peoples' medicine bags etc and all sorts of stuff we were never allowed to attend. Too bad I didn't know then I was half Sioux!!!

In those days there was Prozac as the "new" antidepressant and we used it in PLO; for nerve pain we used elavil, neurontin, gabapenten, etc--try-cyclics po and topicallly or oral solution (but it numbs the mouth). Back then we saw so much terminal diarrhea we were making rice water.

For fungal infections, Sporonax--po mostly; could be put in KY gel, PLO intranasally too.

I'm sorry to say that our HIV-AIDS work since then has been as spiritual directors and chaplains. But if you go online and check PCCA and IACP...you can google them. If you'll let me know where you are and you can use a compounder, I can ask mi esposo if he knows someone good in that area. I'm not advertising here; I'm only offering a suggestion that may make a difference in the quality of life of your patients/clients.

I simply CANNOT comprehend hospice without a GOOD compounder. I would say compounders in general are good but there are just some who are extraordinary and those folks WILL mail you meds overnight which oftentimes is too long OR the good folks can call/email/fax the really creative ones who specialise in hospice folk--if they will.

[doodlemom]

We follow our patients wherever they are - so yes, if they are on the streets, we will arrange a time to meet with them under a bridge or wherever they are. We see some in the homeless shelter. Some are in housing units...sometimes they are in the hospital. But we will follow them wherever they are. We use compounds for some different meds and if our medical director feels it absolutely necessary, we will have something compounded - otherwise - it is way too expensive. We have chosen to put our resources into other work to be able to take care of more people that have no insurance (an increasing problem that is probably not going to get any better.) With all of the competition and medicare trying to decrease our rate of reimbursement....

[thevicarofblue]

I am so grateful for the courage of you and your hospice. Thank you. I'm going to try to convince this local hospice to even BEGIN to comprehend such a ministry--too much fear. I'll volunteer for this work as I worked with homeless people for a long time. I believe you are doing some REALLY REAL hospice. May the blessings of the Holy One of Many Names and Many Ways bless you.

bleu

[thevicarofblue]

in what state are you located?

i just want to give you a big THANK YOU!!

bleu

[doodlemom]

I do not post where I am for privacy reasons. I know there are hospices that have similar missions all over the US. I am very fortunate to work for an agency that has the needs of the community at mind in all that we do. Thanks

[thevicarofblue]

We follow our patients wherever they are - so yes, if they are on the streets, we will arrange a time to meet with them under a bridge or wherever they are. We see some in the homeless shelter. Some are in housing units...sometimes they are in the hospital. But we will follow them wherever they are. We use compounds for some different meds and if our medical director feels it absolutely necessary, we will have something compounded - otherwise - it is way too expensive. We have chosen to put our resources into other work to be able to take care of more people that have no insurance (an increasing problem that is probably not going to get any better.) With all of the competition and medicare trying to decrease our rate of reimbursement....

I assume that you are working for a not-for-profit hospice?

And, without breaking the confidentiality of your hospice, can you speak to your regulations and policies that address caring for people "on the streets," "under the bridges, etc?"

Thank you again

bleu

[doodlemom]

Yes - it is a not-for-profit. Our only policy is that there has to be a safe place for the staff to be. Otherwise, the patient's "home" is anywhere they live - so that might be in a tent or under a bridge. For safety sake, we will send 2 members of the team together. It is not unusual for many of these patients end up back in the hospital over and over again. Many die in the hospital.

[thevicarofblue]

thank you very much for qualifying your policy. i'm trying to convince our administrator to do this as part of REAL hospice work

again, thank you

bleu