Hospice help

Status
Not open for further replies.

Bassmental

New member
Joined
Jun 20, 2015
Messages
2
Reason
CALS
Diagnosis
02/2013
Country
Uni
State
MD
City
Odenton
Hello,
I just joined a couple minutes ago. I just needed an outlet for venting. My mom is in her last days/hours. My last couple of days have been occupied by begging hospice to give us meds that will make her comfortable. I won the first battle by asking to speak to the Dr. and they appeased her needs quickly, but now she has a lot of anxiety (when she is awake) and they are fighting me tooth and nail on getting her something other than Ativan. Either way, I just want to make her comfortable and less anxious about dying. Anyone going through this?
 
Re: CALS Roll call

Hi bass I've asked for your post to go into your own new thread so it is easier to help.

I would find out if there are other hospice services in your area and consider switching.

I'm in Australia so it's way different so far as who is who in organisations, but my palliative care nurses worked closely with our doctor and I had plenty of effective meds here before Chris went into actively dying and a 24 hour phoneline for palliative support (luckily as he started on the Easter Friday morning when all services except hospitals were closed and we were not going to any hospital).

The role of a hospice in giving palliative care is to prevent pain and fear in the terminally ill, so if they aren't doing this, start moving!
 
You are allowed to change hospice ( once in a 90 day period?) but if you are at the very end the logistics probably make that impractical. The change would not happen instantaneously and you might be without someone at the critical moment ( 2am on the day the new hospice was to start say). Who is the problem here? The nurse? Does he/ she acknowledge there is an issue and the conflict is over how to address it? Or are they not there to see when she is awake? Comfort and anxiety control should be everyone's goal and morphine and ativan are pretty standard to achieve that and properly dosed they usually work
But if she is getting good and regular doses and it is not working of course she needs something else. It is horrible that you even have to think of this. I guess I would present specifics to the nurse. ( she woke up at 4 and was shaking and crying even though she had received xyz meds. It lasted 20 minutes. Then it happened again at 9 and 11 whatever)
If you do not get an appropriate response escalate to the doctor or a supervisor. Another possible option if her regular doctor is close to her is to contact them. This is a long shot but around here hospice gets medication orders from the primary physician not the hospice doctor. Usually they take recommendations from hospice and probably they won't override hospice but that would be my last resort.
 
Last edited:
Wow, that is crazy! I agree with Nikki, if she is in her last days, it may not be practical to switch--but that doesn't mean you can go ballistic on them if you don't think she is getting the meds she needs. call every hour and cry, yell ask for the doc ask for the supervisor, what ever it takes. In life, the squeaking wheel gets the grease whether it is deserved or not because people can't stand to listen to complainers. so use that to your advantage and SQUEAK! It may be out of your comfort zone to be like that but keep reminding yourself that you are doing the right thing and it is for her.
 
Hello,
I just joined a couple minutes ago. I just needed an outlet for venting. My mom is in her last days/hours. My last couple of days have been occupied by begging hospice to give us meds that will make her comfortable. I won the first battle by asking to speak to the Dr. and they appeased her needs quickly, but now she has a lot of anxiety (when she is awake) and they are fighting me tooth and nail on getting her something other than Ativan. Either way, I just want to make her comfortable and less anxious about dying. Anyone going through this?

BASS: I'm sorry to hear you're at the end stages. Perhaps my experience will help.

My hospice people were VERY accommodating, but only because I was quite assertive (politely) in getting the doctor to give them orders.

Our nurses were totally clueless about paralysis, and many had no experience with actual death. We had a new nurse every 12 hours for the Crisis Care portion of hospice at home, so I had to train each one.

I think medical personnel, including nurses, are programmed never to let on that they don't know what they're doing. They want us to be assured that they are doing the right things. But really, they are only doing exactly what the doctor says and no more or less.

So I insisted on speaking directly to the doctor at any hour of the day or night--after all, the patient is DYING, and should be a high priority. I would explain our desires to the doctor, and he would explain the solution to me, and then speak directly to the nurse to write the orders.

This way, my PALS had a totally peaceful passing in our house, with no pain, no discomfort, and no fear or anxiety. Good luck.
 
Thank you for all of the wonderful advice. We had her on Ativan, but it seemed to be doing the opposite in regards to anxiety (she would be awake and so confused that it was causing more anxiety). Now it seems her reaction to it and everything has subsided. She is sleeping peacefully now and most of the day/night. I went through the same thing with her pain med. I had to call the Dr directly and leave a message before they would giver her a fetanyl patch. 10 mins after I left the message I got a call back saying "no problem", you can get the patch for her. This was after repeated calls asking for something more practical and effective and being told "no", without any logic as to why. So if anyone gets into this position, asking for the Dr directly worked for me. Thanks again for the existence of this forum.
 
Thanks for the insight. It is helpful to know in advance. How is your Mom doing?
 
Status
Not open for further replies.
Back
Top