Honoring advance care directive? UTIs and what constitutes burdensome measures

verb007

Hi again, 

I posted just a couple days ago asking for some emotional support (you all are wonderful and I cried multiple times reading responses) and I'm back again with a more logistical question. 

Mom is in late stage 6- incontinent, can't shower unassisted, needs help dressing, still has vocabulary but the words she says make no sense. Some days she kind of recognizes me as a friendly face; other days it's like she's just a shell. She cries a lot, and often doesn't even really respond to things she used to love, like music and her grandkids. The memory care folks say she's not eating much. On the good days she's still her funny and sweet self, but there are so many bad days now, and it's hard to watch her suffer, especially knowing it will just get worse. 

She filled out an advanced care directive shortly after being diagnosed (yes I know that's probably too late, but we couldn't really go back in time and make her do a better job planning). It was like pulling teeth to get her to make any decision; she mostly wanted to default to "well whatever you girls will decide is fine with me." 

We ended up with her opting for the middle road of "selective treatment with goal of treating medical conditions while avoiding burdensome measures." Yes to IV antibiotics, no to intubation, etc. 

The problem we're having is that *everything* is a burdensome measure for her at this point, even things that would be really simple for an average person. Our last trip to the dr for some blood work and a urine sample was horribly traumatic for mom, for the poor drs trying to help her, and for my sister that was there with her. If the last time was any indication, even a simple urine test would likely require her to be sedated. 

The case manager at her memory care facility thinks she may have a UTI. We are a little skeptical about her assessment for a lot of reasons, but we're trying to decide how to honor mom's wishes, keep her comfortable, and I guess not be medically neglectful? My gut feeling is that if the dr can just call in a prescription for antibiotics that's fine, but if we have to take her back in for more tests that might be a no go? Is that an okay decision to make? Any advice for deciding where the line of "burdensome measure" is? 

ButterflyWings

Verb I think you are on the right track. We will not be going to the Drs office again, now that I know they can do telehealth or send a visiting nurse to our home, if vital signs are absolutely needed. And he's not even on formal palliative care or hospice yet. But it makes no sense (for us anyway) to be doing blood tests and other "let's just see what we can find" measures, nor transport for any reason other than severe pain control. My DH and your LO can't be cured, but prolonging their discomfort or pain and suffering with the side effects silent UTIs cause is unacceptable. Some PCP's get it, and others don't seem to. I would think MC would adhere to whatever her hospice team says if you have one. They can help a lot with that 'burdensome measures" decision process.

Like I asked his PCP last month: what harm could it do to prescribe a general antibiotic since the home test kit is fairly reliable, and he did have a UTI before?  He has a terminal disease and is already 80yrs old at stage 6b-c. Let's be compassionate and reasonable. Its not like you/we are asking for some highly addictive, super dangerous med to be prescribed.

Can't they get a urine sample onsite and send it to a lab for testing with culture, without an invasive procedure?  I think your instincts are spot on. Someone isn't using common sense but maybe that is the requirement of her MC team unless she is evaluated and you sign her up for hospice. Which can last for over a year or years, I'm told.

Iris L.

There is a device called a "nun's cap" which is placed under the toilet seat to collect urine.  Ask the doctor, nurse or lab about this.  

Iris L.

verb007

Thanks butterfly, it's reassuring to know that others are making similar judgement calls and that we're on the right track here. It's so hard to make these types of choices! 

Iris- thank you for the recommendation! Will ask about it

zauberflote

I strongly agree verb, that going to the doctor's for a simple urine sample is beyond the pale. 

Thought-- have you considered hospice care recently? MIL's hospice RN said to us, "if we think it's a UTI but can't get a sample, we prescribe an antibiotic anyway. Sepsis is a terrible way to go".

Mom had made her Advance Directive earlier in the game, and her emphasis was on unnecessary life-prolonging measures for the mere sake of prolonging her life. Feeding tubes and ventilator were items that came up in discussion. We had a tough decision to make one evening when she presented with a broken femur neck. We sibs decided that walking was so important to Mom that we'd have to go the partial-replacement route, which necessitated going off hospice, and having a whole lot of burdensome treatments, which, thank heavens, she didn't remember from one minute to the next. Which makes them less burdensome, in a way. 

Your mother trusted "you girls" with her life-- my mom was that way too. It's an honor and a terrifying duty isn't it!

verb007

Zauberflote- actually, I just started looking into hospice this weekend to get more info about when it makes sense to place her on that type of care. Based on my research, it sounds like she's not *quite* over the line of when they'd accept her, but getting close. I think we're going to do an informational meeting though to talk more with an intake person. 

I really appreciate the reframe you offered about mom trusting us with her life. I've been wrestling with some frustration with her about her lack of planning for the end of her life and assumption that we'd just do it all for her. I really like how you phrased it as both an honor and a terror. I'll be holding onto that thought. 

jfkoc

I used a "hat" at my local urgent care. I think CVS, Walgreens et al would have one for sale.

MN Chickadee

These decisions are difficult and each person/family ends up with a different plan or approach. What we have done is determine that anything burdensome will only be done if it will relieve pain or improve quality of life but at this late stage we aren't trying to prolong life. So treating a UTI yes, because the effects of a UTI can leave a PWD in bad shape and unable to fully use their limited capabilities, they can be painful, and it's not an invasive treatment. Surgery for a broken hip? No. She would never be able to fully participate in recovery and rehab, and it would end up being an expensive invasive treatment with little hope of getting her back to her baseline. We would choose comfort measures and pain meds. Especially since she has been falling lately, it is scary to know that one fall resulting in a fracture could seal her fate and be the catalyst towards death. But I've come to terms with this as much as possible. We forego most dental work. A year or two ago she had more skills and was a bit more engaged in life, I may have chosen to do more then but certainly not now. 

In our MC they can get a urine sample on site. They do indeed make covers to go over the toilet to collect one that are used for kids and elderly. If you have given a sample in a clinic, you know you are given a sealed sterile bottle, you remove the cap, urine goes directly in, you  put the cap back on. The toilet hats are often not sealed in such a manner or handled with such care, so my understanding is it is more difficult to get a clean sample, but I would still go this route over taking her in. I would think extra care could be taken (don't open it ahead of time, handle the hat and jar in sterile gloves etc.) Does the facility have a doctor or PA who does rounds? If so I would switch mom to that person for her PCP, they can do most care on site. They do my mom's labs and everything on site. I would also contact a couple hospice agencies and ask for an evaluation. They, and only they, decide who they will accept and who they deem ready for hospice. Doctors often aren't tuned into it esp since it's a bit different for dementia than other terminal diseases. Hospice nurses can help you make these decisions on what to treat. When something happens the hospice nurse comes to evaluate the person instead of sending them to the ER. And if she doesn't qualify now she might in a month. Things change. 

Once I was able to accept that mom is terminal, she won't get better, she would not want to live this way, and she has passed the point where her life has quality worth preserving, I was able to get a handle on how to approach her health care. From here on out it will be only things that make her comfortable mentally and physically. It's time to help her land this thing gracefully and peacefully and leave this world, body, and horrible disease behind. I am not looking forward to it, but I am tasked with it both as her POA and her loving daughter. Hard Choices for Loving People might be a helpful book to read, it's not too long and helps frame these choices. 

Battlebuddy

   I could be wrong but I hear you asking some really tough late stage 6 questions. With stage 7 looming I think everyone in that Stage begins to ask questions about how long to continue many of the treatments prolonging life. How long to continue doctors visits? What to do about trips to the ER. How deal with secondary issues like pneumonia and UTIs. Overarching all is how to give the care the loved one would want if they were able to articulate it. 

   I am right there with you , with a late stage 6 loved one. I’ve done a lot of soul searching on this topic. I think the farther you go down the trail , the easier the decision seems because it becomes more obvious. I tried to no avail last year to get my DH into some sort of Palliative care program. In out area that was not possible but some people have good luck with that- a kind of prehospice  program . 

   I have my husband on a informal Palliative Care program. For me this means no ER visits ( did that and it was a nightmare) unless absolutely necessary . No trips to the doctors office   (zoom only)  Yes to prescription antibiotics but at this point I wouldn’t do IV antibiotics. I think we are done with the dental cleanings and general bloodwork. He has had a few Cat scans and MRIs but don’t think he could hold still for it now.The tricky part is his enlarged prostate . Right now treating with meds, but I said no to the scope up the penis thank you very much, that the urologist wanted. 

   I hope that’s helpful. People have different wishes for end time care. There is no right answer to some of this. 

dayn2nite2

In my particular situation (and everyone's situation is different) anything involving an IV, including antibiotics, came under the heading burdensome/invasive.

I allowed oral antibiotics, including liquid, but at the point of IV antibiotics, my decision was no.

My mother had a heart attack 3 days before dying, but there was also a question of whether she had aspiration pneumonia at the same time.  I allowed oral antibiotic but said no to IV.

I don't know whether the heart attack or the pneumonia took her, but either way she did not have to go through the bitter end of dementia.  She died in stage 7.