What we must endure as hospice nurses....

[SoCalRN1970]

I wanted to share a little experience with you all.

I inherited a patient because my manager on a whim decided to change around our assignments and I inherited a long term patient who was with another RN for 9 months.

I was shocked to find that this patient with dx chf did not have the basic comfort meds in the house, ( she was with me only a week ). SHe did an emergency call to our office and family was ****** off to say it lightly that our on call RN didn't carry morphine ( the crazy notion that we even did that and where was the patient's comfort meds in the house if she was on service for months?? ) I had ALOT of sluething to find out once patient got settled.

Long story short, 911 was called because Hospice didn't provide what family wanted. IV, morphine or lasix. OK! I had my hands full.

I had a family meeting with the sweet little 90 year old lady and her son who was a retired paramedic. We went round and round and round. Finally after 2 hours I was able to make some sense out of what was going on and the family and patient was ok with new scripts for the standard comfort pak ( which she NEVER had ordered, who knows why.. being cardiac and all.. )

I ordered the morphine, ativan and the rest. With the son and patients blessings..

The very next week I made a visit. The cute little 90 year old lady asked for me to take her "Kavorkian Drugs" out of the house! I

Found out the the son, the paramedic was calling our meds we delivered with his blessings Kavorkian Drugs"and he instilled the fear of god into her telling her she could take the wrong meds and die.

I removed and destroyed the meds and could not understand how or what were they thinking?

Another family meeting.. the following week. Another 2hour round about with the son ( poa ) and patient. I found the orignial DNR and POLST form in the patients chart on which this son of hers signe for her. It clearly stated.. no hospital, no cpr, comfort meds only.

He openly stated he wants everything done for his mom, and she agreed. They both refused to allow me to obtain a new form indicating this... because, they don't want hospice to stop? ( WHere in the hell did I say that would happen??)

Our meeting ended with son and patient asking if I could only make visits when they wanted me too. Sort of an on call instead of waiting 2-3 hours in the doctors office they'd call me. WOW. Imagine my thoughts about what did the other case manager do for the last 8 months or so? I have NO clue. I offered to assist them with a discharge as they were clearly not on board with hospice philosophy... my agency shot me down and would not support this. ( GUESS WHO JUST GOT NOTIFICATION OF ADRS NEEDED FOR 70+ CHARTS FROM MEDICARE? ) Now, they agree she needs to go.

Good news. Mrs patient discharged today, she is going out of the area for a few weeks and opted to discharge. Say a prayer she doesn't come back.

[tencat]

Geez. It gets really frustrating, doesn't it? I hope for your sake she finds another hospice to terrorize should she decide to go the hospice route again.

[Hospicetex]

It is frustrating and we have one of those here with nightly prn visits. They just don't want to be on board with the POC but I know the nurse is doing everything she can in regards to education.

[AtlantaRN, RN]

Noey67-I FEEL your pain. I'm the weekend call nurse and we have a nurse that just does not get ekits for families whether they are at home or in a facility.....

You can't fix people, all we can do is treat the symptoms. With son being a paramedic-and with all the "myths" with morphine, i'm not suprised with his reaction for the comfort meds. I call it a "drug buffet-" and it's better to have it in the house and never use it than to NOT have it in the house when you need it......I tell people "if you have never been nauseated in your whole life, I can guarantee the first time will be at 2am....do you want to wait til the pharmacy opens for relief, or would you rather get one out of this comfort kit??" 90% of the time, people are OPEN to this....

BUT, you could not fix this situation.......Even when we have patients on service and they are a DNR and decline and decline, sometimes at the time of death, family freaks out and calls 911.....can 't change it.....educate and educate till you are blue in the face, but we still can't change what they do....

[SoCalRN1970]

Super fantastic news for me anyway. I discharged this nightmare case a few days ago. I was more than happy to coordinate services, dme and whatever to get this problematic individual to her family out of state.

Good news.... just before her trip her Paramedic son called to tell me " my mom didn't take her lasix and I don't know what to do". " Ah, give her todays dose.. and she is off of hospice so I will not be able to make a visit" "I'd suggest that someone actually stays with your mom 24 7 since my last few visits indicate she is not compliant even with her routine meds..... and giving this I assume it will only get worse. SHe needs more help then she is getting....

It felt so good to say, she is off of hospice and essentially you need to step up!!

[AtlantaRN, RN]

amen, we don't replace family........

and "what you did before hospice was involved, is what you will do NOW that she is no longer on service...."

[Ginapixi, BSN, RN]

my personal feeling: many, many times hospice is there because the docs have "given up" - there is nothing else they can do (may be because patients are not compliant, who knows)- but people in general do not want to hear that there is nothing else that can be done; the cold fact that "you are going to die" is unbearable! modern medicine is failing them and now hospice is to take the place of the "savior"; for some it takes a while to understand that we are all going to die, the only questions remaining are: where? and how? comfortable at home, in pain, in a facility.... those things pt and family have to decide and all we can do is make them figure it out; others will never understand (at least not while we are actively involved);

we had one pt who on his death bed (died 2 days after his comment) in the hospital told the doc he wanted more chemo, even though doc told him he could not tolerate it; families are often helpless and look for guidance; and guidance is all we can give, the decisions are theirs and theirs alone!

same with family who pushes food or even TPN (and the lungs fill up because the body cannot handle it any longer); my conclusion i arrived at is: the pt raised that kind of family, they are theirs not mine and they have to live with their own decisions if all my educating seems to fall on deaf ears;