Question about Antibiotics While on Hospice

[Barb73]

It turns out that Bill has developed two bed sores, one of which has an infection.

The hospice nurse couldn't get hold of our doctor (he is on leave for a week and will be back soon). She contacted another doctor (I don't know him), and he said that because Bill is on hospice he wouldn't recommend giving the antiobiotics for the infection.

This, of course, would mean that the infection could become systemic, and Bill would be in a compromised position regarding the spread.

I feel very uncomfortable with the decision as Bill has been eating well, and able to leave the bed (by way of the Hoya Lift), and is communicating with us.

My thought is to ask our doctor (when he returns) as a second opinion (actually, should have been the first) whether he agrees with this stance.

Thank you for any comments on this. It would be so appreciated.

It is not that we are trying to keep Bill alive at any cost, but that we don't think that antibiotics come under the heading of aggressive treatment.

Any thoughts?

Barbara

[Reynsie48]

Hello Barbara,

So sorry to hear that Bill is having problems again. I am no where near an expert but if it were my husband, I would push to get an antibiotic for the infection along with a regimen for treating and dressing the bed sore. A bedsore left untreated with or without an infection will get worse and sepsis is a real worry but as well, they can become extremely painful.

I am not sure whether or not this would be considered aggressive treatment but in my book would not only make sense but also be competent medical care. It has been some time since I have nursed but even back when we worked on geriatrics you treated a bed sore and or an infection with whatever was necessary.

Just my thoughts,

Sandy

[shineladysue]

Barbara,

You asked for "thoughts" , so in my way of thinking, I agree with you . I have no experience dealing with hospice, but I know many here have and hopefully they will chime in with their personal experience. I just know that the risk of systemic infection is very real. To think that a patient would be denied, a much needed, antibiotic because he is on hospice would certainly be a very upsetting thought and not what I thought the purpose of hospice was meant to be. Certainly, the hospice people have had similar situations before and would know if that is common practice. I'd push for the antibiotic. God Bless you and Bill...

Hugs,

Sue

PS: Can you tell the thought of this upset me?

[recce101]

I agree. Being on hospice means the emphasis is on comfort care, and I think using antibiotics to prevent an infection from a bed sore would be part of comfort care, just like changing dressings and keeping the area clean. That would be true whether or not any infection might progress into sepsis.

Love and Aloha,

Ned

[michellep]

When my husband was home on hospice they would not allow any type of antibiotics at all. He also had severe bed sores. So, what I did was buy the antibiotic cream with pain relief in it from the drug store. Hospice told me I wasn't allowed to use it but I did anyway. It helped him a great deal with the pain from the sores. They told me to put him on his side and tuck a pillow under so the sores could breath and heal. He refused and always ended up flat on his back yet again. Hospice has rules that perhaps we don't agree with as far as medications, but I only cared about my husbands comfort. I also had some antibiotic pills left from the past months that I gave him.

Bless both you and your husband during this time. I know exactly how you're feeling and what you're dealing with. Contact me anytime if I wasn't clear enough in this message ok?

((((hugs and prayers))))

[dianew]

Barbara - I cannot imagine an antibiotic for a bed sore would be considered aggressive treatment by anyone's standards. I have no experience with hospice, but as Ned said, they are supposed to be about comfort - how comfortable can anyone be with open bed sores. I hope you are able to get ahold of Bill's doctor and get something for him that will take care of these.

You are both in my prayers everyday.

Diane

[ginnyde]

Barb, I don't know the answer based on hospice rules. I even searched the internet and couldn't find anything definitive.

That said, I am appalled that hospice would not provide an

antibiotic. I thought hospice was all about caring and comfort. To let someone suffer needlessly is just cruel.

I hope you have gotten this solved and that Bill's bed sores are on the mend.

[fillise]

barb--I agree that you should be able to make the argument that this is comfort care. From what I have been able to tell these types of rules are set by the care service and not any sort of hospice regulations.

Susan

[Barb73]

Thank you all for the input on the antibiotics. Today, I was able to get hold of our GP, and after explaining to him about the need for something for the sores, he ordered an antibiotic to put into them.

I don't know how this will work as opposed to an overall ingestable antibiotic, but it should be able to do something.

We will be using it tomorrow as it was not available late today at the pharmacy. Hopefully, we will get it by morning.

Barbara

[Barb73]

Katie,

Thank you for the support. I am of like mind when you describe what you wanted for your parents. The same goes for me.

It will be, if I can help it, when Bill is ready and not a minute sooner.

As for the medications, Bill has been on a Fentanyl 25 mcg patch, and very little else.

Since this hospice began, he has had a 1/2 Percocet on two occasions. That's about it. He remains lucid and it is so much more pleasant when he can talk to us and relate to what is going on around him.

He is in no pain, and we do hope that continues.

Your input in relating your experience has given me the bolstering I needed.

Tonight, we are experiencing such very strong easterly winds that our American flag ( on pole on front lawn) is in shreds.

Gratefully, no blackouts as yet and hoping that there won't be any.

Barbara

[Barb73]

The latest is that we will be putting Bill on a (Foley) catheter for the urine. It will help greatly in keeping the wound from being inundated with urine - a giant help.

The antibiotic that his nurse requested was refused by our doctor (GP). Why? Who the hell knows? But, he is not the end all - be all. A higher power is.

Despite that, we will do our darnedest to get him whole again where he was prior to the bed sores. Presently, he has the classic one - sacral (sacrum) area.

We will be receiving more nursing care for the wounds.

The answer was that he will be receiving four days a week extra care for the wounds. Thank you, God.

Thank you, Lord.

Barbara

[jaminkw]

Barbara, I missed your earlier posts because I was on Hall Pass. It makes me so angry when I hear these things. I do understand the need for rules and regulations in hospice and many areas of our lives. It is the seeming inability of the people, the individuals we deal with, to respond to those rules with some common sense--like, here's the prescription for the antibiotics but I'd suggest being discreet and paying out-of-pocket for them so it doesn't compromise his eligibility for hospice. I just don't know what's happened to common sense. It is just plain crazy the way we do things today.

Just to be sure they are giving it to you, I will call my daughter tomorrow and ask about the marvelous ointment she was just talking about that she says clears up bed sores very quickly. It may not work until the antibiotics take hold but it sounds like a good maintenance tool.

Bless you and Bill and your family.

Judy

[Barb73]

Thank you, Judy. If you can find the name of that ointment it would be very helpsul.

Barbara

[jaminkw]

Barb, I slept late but just called my daughter. The cream is called Allevyn. I've never seen it but never looked either. Don't think it's a script or she would have told me. We didn't talk long because she was at work. When I get offsite, I'll see if I can find it online.

Judy