Aware of advance directive but not the details. Should the hospital have even treated our grandmother in the first place?

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Lorilassick Asked December 2016

Aware of advance directive but not the details. Should the hospital have even treated our grandmother in the first place?

My Grandma is 84. She was diagnosed with breast cancer in 1999. Went under surgery and treatment only the find that on 2001 it traveled and become bone cancer in her pelvis. Since then , she has had a pacemaker put in (2004), had a knee replacement, suffers on and off aging severe bouts of vertigo, which leads to falls. Most recently Nov 26th, she suffered a horrible fall resulting in 2 broken cervical spines in her neck, and multiple fractures through the back. She is in a C spine collar and back brace currently still. She was hospitalized for a few weeks, including 10 days of intensive rehab. Became well enough to be discharged to go home. She was to go home Monday December 26th. On Friday December 23rd, we received a call from the home that they found her unresponsive and slurring words and we're calling a ambulance (original thought was a stroke). Came to be that she had a UTI. For 3 days she was delusional. We watched and waited. Christmas day, we were told to consider hospice, which was a shock since we were told by drs that it was just a infection and she should.come around in a few days. We came to find out that her Advanced Directive had no antibiotics or IV fluids on it. We were already 2 days into treatment at that time, and decided to continue forward. She is slowly coming around, but we have .outlying put her back at square one as far as rehab goes and I feel horrible. We were aware she had a AD, but unaware of such detail to it. My uncle insist that she wasn't aware either, my aunt says yes she was. I live near my grandmother and am very close with her. I KNOW that she has been ready to "let go", and now I feel that we went against her wishes. She is still not well enough to have the discussion with, and I fear it's going to happen again, sooner rather then later. My uncle says if it does we will treat again, I say no let her go. The wOman has suffered enough through her life and I know she's ready. My question is mainly, in a case such as this:
1. Should the hospital have even treated her in the first place? Her AD was on file there and we also gave then another copy again that night
2. Is a UTI severe enough means for a AD to come into play?
My uncle says no...we're all "dying", it's a infection that can easily be treated. I say yes, if it requires her to be hospitalized for treatment and rehab her AD should come into comsideration. He is the POA, so ultimately I have no "say" although we are a close family and try to make decisions as one. If and when she gets well enough to discuss this matter with a clear head, I honestly have no doubt that she would have not wanted us to do anything. I fear that he will talk.her out of it. He lives a state away and is not here to be the one taking care of her and talking to her like I do. Anyone else ever faced a issue such as this?

Elder Law

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score 1 · Answer 1

If you have medical proxy, then AD should stand. I would have conversation with care team and demand they honor proxy. Let them go ahead at this point with 1st antibiotic trt but that is it. No more bags of potassium, artificial feeding, stronger antibiotics. Let grandma pass in peace as she wished. Make copies of AD and literally tape up over her bed at hospital, her home or residential care. Having on file is not enough ive learned --gotta have it visually posted so everyone that touches grandmother can see. I also carry my moms will, AD, POA on a zip drive in my purse. A good tip from others on this website.

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score 1 · Answer 2

Last summer I had a UTI with hallucinations. I argued with my husband that I wasn't Sandra, I was our boxer dog, Sallie Mae. I ended up in an ICU unit for 7 days and another 7 days on a critical care floor. I am not as old as your grandma, but when I came around and got really alert, I didn't ever think that advance directives should have come into play. I am sure glad that my husband was there to speak for me. I am a retired nurse and we had long discussions as to what we both thought about our AD long before then. He had a long talk with the doctor and they were very sure that I could be healed of the infection without any further damage to my mind or body and that came into play with me. I am really glad that they gave me the IV antibiotics. If I had another stroke or my kidney functions had gone down, then everything would have been called off. When I got out of the hospital and fully recovered, my husband and I both tore up our advance directives after consulting with an elder care attorney and making our thoughts known to our 3 adult children. When these things get so technical that your family has a hard time knowing what you would want done and things seem so questionable, then that patient has not completely talked to the person that is to make that decision. All 3 of our adult children admitted that they could not be the one to say no to the treatments. Of the 3 kids, one is a social worker. My husband could not do it, either, so we made the decision that our death would come on God's calendar, and no one else. It is a personal choice that everyone has to make for themselves. I am a cancer survivor, also with many other health problems. Hang in there, Lorilassick, pray and meditate about this and have a long heart to heart talk with grandma when she feels a little stronger. Hugs! Sandra.

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score 1 · Answer 3

Lorilassick, I don't think Sunnygirl was accusing YOU of ignoring her ... just surprised that the hospital acted as it did without consulting you.

POA grants authorization to handle finances and legal matters, not health issues. If Gramma chose you as her healthcare proxy, then you have the responsibility to make medical decisions when she cannot. It sounds like you know her best and will act in her best interests. If your uncle tries to interfere, tell him to ask an attorney. Your role is not an easy one, especially if your uncle disagrees with you, but it is you that Gramma trusted with this responsibility.

Are you bringing in hospice for an evaluation?

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score 0 · Answer 4

Let me make it very clear, she was not "ignored" by her family intentionally. We were not aware that her AD had such specifics on it until 48 hours AFTER the hospital started treatment. At that point, we were told after another 24 hours she would be "cured", or at least grom the delirium part of the UTI, which she was. My question, in the original question, was that i didnt understand how the hospital was allowed to treat her with them having a copy. They did NOT come to us before treatment and say...heres what it says, what do we do. They just did. Thus leading to the 2nd part of my question, is a UTI considered a severe enough life threatening infection that her AD would even come into effect? Believe me, shes not being ignored. She, as a matter of fact was discharged this evening, to her house, under my care. I have a husband and 3 teenage boys, but this is where im at caring for her, because thats what families do. So, please, do not ever accuse me of purposely ignoring her. Im only 37, ive never had to deal with these things yet, ive reached out on here bc its seems like a caring site, not an accusational one.

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score 0 · Answer 5

Lorrilasik, I'm not sure what more anyone needs than a written AD AND the patient telling you what they want. What's to wait and see about? People who do the rights things regarding their wishes regarding their treatment should have them followed. I've never heard of anyone being so ignored. It's very bizarre, imo. If you have questions, I'd consult with an attorney who can advise you the law in your jurisdiction.

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score 2 · Answer 6

The first thing to consider is Gma's quality of life. From what you have described it is now very poor and filled with pain. To me that would be a good indication for bringing hospice in if Gma agrees. Treating an infection does make a patient more comfortable but does not necessarily extend life. On the other hand failure to treat does not garuntee certain death. At this point I would continue with the treatment she is recieving but if she is not responding do not get into the realm of exotic antibiotics.. Her wishes were quite clear so as always be vigilant when dealing with the medical profession and question everything.

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score 3 · Answer 7

I'm going to suggest that you hang onto that AD and ask Grandma to have a talk with her son. And get Hospice to evaluate her WHILE she's in the hospital.

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score 3 · Answer 8

Who signed her into the ER with permission to be treated? That person overrode the advanced directives. Now you have heard her opinion, now you call Hospice and let her talk to them. You know what she wants, now you gather the strength to carry out her wishes. Not easy, but it's what she wants.

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score 0 · Answer 9

I spoke with my grandma briefly this afternoon. She is still not 100% "with it" but after explainimg what happend and what could have happend she very simply said, "i am not going through this again." I told her it would be revisited once she gets a little better and clearer , but im pretty confident that i knew that was her answer all along...just didnt know we had that choice. I am also very shocked that the hospital did nothing about it until we were 2 treatments in. Like i said earlier, we had the paper, just never read it entirely. They were given the paper before the first round of antibiotics were even administered.

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score 2 · Answer 10

A while back my mother had a fall that landed her in the hospital. While mom was there it was discovered that she had cellulitis on one shin. Cellulitis is an infection of the skin that is usually easy to treat and cure but if let go it can become septic. To my surprise the doctor approached me for permission to treat using antibiotics, citing moms very specific and strict AD. I gave permission. Later, when my mother had a clear moment I asked her if I'd done the right thing. Mom said "oh yes, I meant things like "pneumonia".

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score 2 · Answer 11

Since she is already being treated I think the ship has sailed for this round of illness, now that you have all seen her advanced directive you will be better prepared the next time. As for POA vs healthcare proxy... I assume the poa your uncle has is concerning her finances, your healthcare proxy should put you firmly in charge of all her medical decisions.

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score 0 · Answer 12

This is really wild. All of the doctors/hospitals, etc, that I have dealt with with my cousin INSISTED on seeing paperwork. They wanted to know details, before doing anything. Of course, she has dementia.

I would insist that her AD be honored. It doesn't matter what others think. It is her call and she made it with her AD. If you explore the AD document, it may have language that says, "If my HCPOA says anything different from my AD, then my AD overrides my HCPOA." I'd check on that and insist it be upheld.

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score 1 · Answer 13

Her cancer has beem meticulously monitered. She began taking a iv drug in 2002 which stopped the cancer from being able to spread. The way it was explained to me before was it makes her bones like cement, which for an elderly person is a blessing. I did not however think to question any of those things. It is strange that she has fallen numerous times over the last few years...yet this is the first time she has broken anything. Thank you. I will be checking to see when her last PET scan was done (she has them annually).

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score 2 · Answer 14

I think you've just answered your own question in your latest post. Since at the time you hadn't seen the AD or read it, you weren't able to know the specific terms and directives. Assuming the hospital did, it presumably followed the terms.

W/o knowing the specific details of the AD, I would say generally that if an infection would be cured, it would be treated. If it was uncurable, that might be a stronger indication for hospice.

However, there's another issue. You wrote in the first part of your thread introduction that in 2001 the breast cancer was discovered to have metastasized to the bones. I am frankly totally amazed that she's survived so long with that kind of metastasis.

I would ask the doctors if any further metastasis has occurred, and if that was considered in the decision to recommend hospice. I suspect it was. And that's probably a stronger indication for hospice than a potential recurrence of the UTI. In fact the cancer may already have compromised other organs and made it more difficult to recover from the UTI.

You wrote that she's "ready to go." I would let that also be my guide; it is her life and if she's exhausted from the battle, it's time for her to find peace.

You might want to, or have a doctor, explain to your uncle the nature of metastatic cancer and how it can eventually compromise multiple systems.

The nasty fall she experienced recently makes me wonder if her entire spine has been compromised by the cancer metastasis.

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score 0 · Answer 15

Also, i would like to be clear...that although we knew she had a AD, we did not know that it was so specific. Had we known then...it may have been different. No one was saying do/dont treat her friday night bc we didnt know it was an option that she didnt want treated. When we found out Sunday about the specific on AD, we were already 2 antibiotic treatments in and no one at that point was willing to stop the treatment.

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score 0 · Answer 16

I dont feel that any infection is an "ideal" way to go. Realistically, hospice would be involved if that decision would ever need to be made regardless. No ome wants to see her suffer from anything. But the fact is, she continues to get weaker and her quality of life is depleting daily. She has NEVER wanted her "end" to be long and drawn out. Belive me, if it were up to me she would become immortal . Unfortunately, we all know thats not the case.

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score 0 · Answer 17

Mother has her AD posted on her kitchen cabinets, so I think everyone who has been to her apartment knows it by heart now.
Hers is VERY detailed, IV's ONLY if she needs antibiotics and the chances of her surviving "whatever" (likely a UTI or pneumonia)..and that's a sticky part for me. I'm glad I am not her MPOA. Hospitals "have to" accede to the stated AD. I'm hoping it won't be an issue.

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score 0 · Answer 18

My uncle is her POA. There are 3 of us as far as family goes for her. My Uncle (her only living child), myself, and my brother (our mother, Grandma only other child passed away 30 yesrs ago). We all have a "say" in her care. I specifically am listed as her medical proxy. I dont know if that would overide his being a POA or not. My main question is , being that her UTI wqs serious enoigh to require hospitalization including IV fluids and IV antibiotics, should her AD been followed? Ideally we all know the UTI can be treated effectively MOST times. But, with her age and history and health problems i feel we should have put her AD in place at that time.

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score 1 · Answer 19

Often times hospitals are between the rock and a hard place - the AD says no but the distraught relative at the hospital says treat. It's like the organ doaner notation on a drivers license. Be sure your loved ones are clear on your final wishes - or they may not happen.

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score 2 · Answer 20

I think that dying from sepsis brought on by an untreated UTI would not be a merciful ending. Something like pneumonia - sometimes called the old people's friend - is an example of a time to choose no antibiotics. I think you really have to just do your best to weigh the pros and cons of how any treatment will effect her quality of life, keeping her advanced directive in mind.

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score 0 · Answer 21

Difficult.

In your place, I think I would report my concerns to her attending physician and ask them to explain the hospital's AD protocol to your POA uncle. Note, the hospital will not be able to discuss your grandmother's care with you; but that doesn't mean you can't give them information and expect them to take it seriously.

When you say "we watched and waited" who's the we? Is one of your parents involved?

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score 0 · Answer 22

Loril, if your uncle is proxy under a DPOA or POA for financial and legal issues, he wouldn't the same authority as he would under Living Will or Advanced Directive.

That's the first issue; if you could clarify it would help others provide answers to the other dilemmas you raise.

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Aware of advance directive but not the details. Should the hospital have even treated our grandmother in the first place?

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