ESBL and Hospice

tonyac2 · April 12

Last Thursday hospice came to the house to do an evaluation on my husband. I told them I thought he was in stage 6. After answering some of their questions the nurse said he’s in stage 7. That caused my heart to skip a beat. He got out of the hospital last Tuesday after being treated for a UTI that turned into an infectious disease, ESBL. Evidently this bacteria has colonized in his urinary track and will always be there waiting for the right conditions for it to activate. Retaining urine and dehydration are the activators - which is just waiting to happen. He needed IV antibiotics to calm it down. Hospice told me they would give oral antibiotics but not IV. The bacteria is resistant to oral so I don’t believe hospice is the right choice right now, I asked for a referral to palliative care. Hospital stays are brutal on him and me. I’m wondering if the bounce back after discharge is enough to warrant the treatment. I’m in such a horrible place. I wish the choice were taken out of my hands. Hospice said they would keep his file open for two months. I don’t know if I have a question other than what have others gone through. Thanks for hearing me.

SDianeL · April 13

In stage 7, my DH couldn’t swallow and developed aspiration pneumonia. The facility said if they did an X-Ray and found pneumonia they would have to transport him to the hospital. I made the difficult decision not to transport him. He passed peacefully 2 days later. If the infection is going to happen over and over why put him through that in stage 7? I know how difficult this is. Hugs. 💜

Karen711 · April 13

I will defer to those with more experience than I do, but sending you my best wishes and a hug!!!

harshedbuzz · April 13

@tonyac2

That is a difficult decision. You don't have to make it now. And you can change your mind. A couple things to consider—

If you were to go on to hospice care, you could change your mind at any time and have him transported to the ED for admission and treatment. Until the next medical crisis, you would have support in the form of bath aides, nurse, social work, supplies, etc. This would give you a sense of whether the quality-of-life piece outweighs quantity at all costs.

You could always turn down hospice for now. You could wait for the next UTI and do the transport/admission and see how it goes. If this condition is going to become chronic with admissions every month or so, the choice may feel different to you.

Is there a possibility that the ESBL will become resistant to the medication typically prescribed? I know from experience (see below), that sometimes a medication that worked once doesn't going forward. IME, doctors will often prescribe meds that are more easily tolerated, are less expensive, and/or given for a shorter period first. This means if resistance develops, his medication regimen and length of stay may become longer and more difficult.

Regarding his VI drugs, is it necessary for him to complete the course of abx in the hospital because of monitoring or is this something that could be managed at home? My mom's (no dementia) had 2 rounds of sepsis with TAVR last year that required IV medication. The first round, which was not successful, was a 10-day IV push. I moved in with her for the duration as her vision and tremor meant she couldn't DIY. The second round, mom was prescribed a different medication in an elastomeric infusion pump which only needed to be changed once a day. That said, in both cases I had to take her to an infusion center for a weekly dressing change and removal as well as to the lab for blood draws. In theory, there are infusion nurses who can come to the home and do both, but I was not able to find one in my medically well-served community. This is to say that even though we managed care "at home" which put an end to the hospital psychosis, it wouldn't be easy for a person with later stage dementia.

Most folks on the Stage 8 side, encourage folks to get hospice services as soon as their LO qualifies. My dad lost considerable weight and developed pneumonia. Talking with the DON, we agreed to getting a hospice evaluation as I felt my mom, especially, could benefit from the spiritual piece. Alas, dad died hours before the nurse came which left mom without ongoing bereavement support that is helpful for many.

HB

tonyac2 · April 13

https://alzconnected.org/discussion/comment/270246#Comment_270246

Thank you @harshedbuzz I value your input. It’s my understanding that the ESBL culture was tested on a panel of 10 antibiotics. It grew on 7 so the doc picked one of the three that it didn’t grow on. The hospice nurse told me that eventually the decision of hospice might be taken out of my hands as treatments may no longer work. This is a horribly difficult place to be in.
I wonder how many times I could put him in and out of hospice? IV treatments at home, that’s worth looking into.

terei · April 14

I am going to be blunt and ask if your H is stage 7, what is the purpose of aggressively treating to extend his condtion with little or no quality of life? At some point, treatments end up being torture. You do use the term ‘brutal’ in describing hospital treatments and procedures. You may want to examine the idea that you are in denial that your H is terminal and decide whether you want him to have a peaceful and pain free end or continue aggressive treatment that is painful for both of you.

I suggest reading ‘Being Mortal’ if you have the time to try to come to grips with his inevitable death.

tonyac2 · April 14

https://alzconnected.org/discussion/comment/270314#Comment_270314

That hurt, but it’s fair. I very well may in denial, denial that his days are numbered. I’m desperately trying to fix things that are not fixable. I’m trying to change and control how things will end.
He bounced back after this recent hospital stay. But does he bounce back enough to justify the hospital and treatments? Who answers that question. This wretched disease has been widowing me little by little day by day. Some days I think I can let go, most days I can’t. What a horrible place to be. Thank you for your honesty @terei

howhale · April 14

https://alzconnected.org/discussion/comment/270315#Comment_270315

You are strong, maybe stronger than you realize. Accepting the blunt input from terei is strong and courageous. This disease demands us to learn to be open to hard truths and strong enough to make horrible but critical decisions. I agree with terei as well. I am in Stage 8 and learned to give my DW what was best for her, not for me and others. I knew she did not want to live her life declining as she did. I know because she watched her father and told me so. I made the mistake one time of taking her to the ED and almost lost her to being forcibly committed to a mental health facility which would have killed her. Making your loved one as comfortable as possible at home or whatever their home is to them to spend every precious remaining minute together has to become our objective. We cannot save them, we know the outcome, it is just a matter of how we get there and every decision has to be for them, not us or others or society. Stay strong, you will know what is right, your loved one will love you for doing the right thing for him.

dayn2nite2 · April 14

https://alzconnected.org/discussion/comment/270314#Comment_270314

I will chime in and say I agree. While your natural instinct is to do everything possible to "save" him, it all ends up in the same place, right? It is not terrible to not treat an infection. My mother had a probable heart attack and hospice asked if I wanted her transported to the hospital. No, I did not. I wanted her to stay where she was and be comfortable. She was. She slipped into a coma the day after and died 3 days later. It was a good death, as deaths go.

Maru · April 14

https://alzconnected.org/discussion/comment/270239#Comment_270239

Your problem is one that almost all of us will have to make eventually. I am not there yet and praying that my DH will die before I have to make those tough decisions. I don't have advice, just sending love and prayers. May you make the right choice for you and your DH. Hugs.

JDancer · April 14

I will also be blunt. I would welcome a life ending condition and would not treat, other than pain management

jfkoc · April 14

I would give palliative care a chance.

Michele P · April 14

https://alzconnected.org/discussion/75795/esbl-and-hospice

We went through this with my mil with frequent UTIS that put her in the hospital. Once she could no longer swallow, a feeding tube was inserted because legal documents were not in place to stop it. Once this happened, we stopped treating the UTI and allowed her to die in peace. The suffering for them is endless until the end in stage 7. Most would tell you that they would like to spare their loved one from this if at all possible. This is a gut wrenching decision to make. I am so sorry you have to.

ESBL and Hospice

Comments

Commonly Used Abbreviations

Community Guidelines

Categories