As a brief recap, husband was transported from home by ambulance with the instructions that he is dnr and dni. His hospitalization (er followed by admit to icu), was followed by rehab, then alf, then hospice and under their care he died. The entire process was about six weeks.
The bills are coming in. I have noticed that he was "endo" or "endotrachael" intubated in ER and then "extubated" in icu. I don't know which tube it was.
How can this be when there was a dni order? Could he have peacefully died without that procedure and not gone through six more weeks of ****? Is this a procedure that can be done despite a dni order?
I've looked it up on the internet but I am still dazed and haven't read anything that could help me as much as the information from what I know is here.
The ER did the right thing IF they did not know about the DNI order. By law, they have to do everything medically possible to save a life dispite the prognosis or diseases the patient may have. IF they were aware of the DNI order and could have accessed it (if it was on the patient's chart) then they shouldn't have intubated the patient. AND you have to remember that in an ER if a patient is having difficulty breathing and they fear the patient is about to arrest...they will address the patient first and once the patient is more stable it is only then that they are able to wade through paperwork or talk with family. Unfortunately, it is only then that they discover the DNI order. The ICU did the right thing by extubating once the order was discovered/or they were informed by family that the order existed. IF the ER was aware and proceeded anyway....I would NOT pay any bills associated with that procedure. Tube, procedure charge, ventilator etc. You would see all that on an itemized statement. I seriously doubt that this changed the progression of things in the end. The time he was intubated, he got the oxygen delivered that he needed to sustain life. Once the tube is pulled, he went back to pre-intubation state that he was already in. It would not have worsened his condition. I am so sorry that it happened and more so for the anxiety that it has caused you. You have done everything you could have possibly done for your husband. You were his advocate and the course of this hideous disease is, unfortunately, what caused his demise. I hope this helps. Please don't second guess anything that you did or didn't do now. Rest in the peace that he had YOU on his team. My husband and I have made the same choice about DNI and DNR. It could very well happen to us one day. It will be up to me to make sure that everyone is aware of the legal paperwork and sometimes in the rush to "save" a patient, it is not communicated until life saving measures have already been taken.
I agree with Aunt B's comments. Additionally, if a patient is not to be intubated or resuscitated, you should think seriously about whether or not to take him/her to the ER, where they are required to do everything they can to save the patient. Alzheimer's is a fatal disease, and it may be better to let the patient die peacefully at home rather than in the hospital with tubes in every orifice, including new ones. This is one advantage of having Hospice on board. In an emergency you call the hospice nurse who will help you decide what to do.
Marsh you are so right. A couple of weeks ago when my dh pulse were up to almost 120 and then dropping to the low 50s and he was in need of oxygen and looking like he was going to faint or die....I was so frightened with no one here except me. But, I had to fall back on what we had planned together when he was able to understand...and that was the DNR and other forms of continuation of life....and I knew I could not call and have him taken to the ER because he had told me what he wanted when he understood.
It shook me to the core to do nothing...but, I got through it, even though nothing really terrible happened to him...but, I will do it again and again if I have to....No ER...no nothing unless there is pain. I do not want him to live a minute longer then he needs to with this terrible condition because this is not living.
It is so hard to do "nothing" except be there for them. Some of you probably need to think about this really hard because you are going to need all the strength you have to NOT do ANYTHING. It is one thing to talk about this with your spouse, but another thing to experience doing nothing.
Abby...please don't second guess yourself...you did what you needed and wanted to do. Each case is different. and no one knows the "what if". I don't know "what if" my dh had died when I didn't take him to the ER, would I have quilt feelings...probably. But, just remember in the end, death is not in our hands it is in the hands of our maker.
I was in the ER with DH when he stopped breathing. I could see it was over. A nurse Immediately placed her hands on his chest to start CPR. I just shouted out "he has a DNR". She stopped immediately. She couldn't stop apologizing. She said it is just an automatic instinct and she was so sorry. The copy of the DNR went from the nursing home to the ER in the ambulance. It was their error. Thank God I was there.
A few weeks ago I had all my documents Wills. POA, LW etc. reviewed and updated by and Elder Law Attorney. I want to confirm all that what said before by prior posters. The attorney who did the work explained that only an MD can order DNR or Dni order . etc and the ER Staff would not beaware of any order. Her suggestion was to obtain signed orders from all of our MD's, certified mail a copies to the ER and Medical Records where EMT services would most likely take either of us and request that the order be entered into our pre-existing computer medical records. I recieved a letter from Medical Records confirming receipt, that they would do their best to adhere to our wishes but due to the very nature of the ER there was no 100% guaranty the attending physician would have the opportunity to review all records prior to reacting to the immediate crisis. I also have a MD signed copy at home to provide to EMT prersonal upon arrival.
This will be long. I will try to be chronoglogical. I never wanted husband to go to ER and begin the end of his life that way.
In March we had an appointment with his general N. This is the same N who said that despite the observable decline, H could live "like this for 30 years". The N and I spoke about hopsice and he said it was not yet time, that H did not meet the qualifictions. Here, hospice eval can only be ordered by a pcp.
So, we are mid-April. H is increasingly falling. I am picking him up and getting him to sitting and/or his bed. He had threatened me before in rage, but never physically hurt me. Regardless, he lashes out at me from anger and frustration and as a result I have several significant hematomas.
Late April: He falls and I cannot get him up in any way. He says he will and can get up but this does not happen. He wants his meds and is increasingly agitated. I cannot give him meds while he is face down on the floor. He is 6'2" and I cannot move him at all. Following hours of trying I tell him I must call paramedics. He curses about this. I try to placate him by saying they will only place him on his bed and nothing else will happen. They come, they place him in bed; it is a brief visit.
Within two hours he has fallen and is on the floor again. I cannot lift or move him. Again, it is time for meds. I tell him I need to call the paramedics back.
The same crew comes back. They look at him, they look at me, they notice the hematomas (it was warm and I am wearing shorts) and ask about the situation. I say I am not abused. They ask if I have a poa and I produce it for them. They state, don't ask if they can speak to H directly and of course I agree.
I don't have to explain to anyone reading this how they can change in a moment, and how this can be a product, for lack of a better word, of different people, especially people in authority. Here are five or so very nice men, but different men, of course, in his bedroom asking questions.
What is your name- he gives his full name. Where are you- he gives the city and says "hotel". What time of day is it- he says night, which is correct. Who is here with you- he says "wife".
Finally,-are you in pain- he says yes. Then, do you consent to being taken to the hospital-"yes". He is loaded for transport and asked again. I don't believe it, but the answer is again "yes".
I tell them he is dnr and dni and they say they have to assume full code and the electronic chart can verify. They ask if he is on hospice and I say "not yet". I know H wants hospice.
H and I have been mostly alone for quite some time. I am shocked by how they see him. Long story short: he is transported and then the rest of what I posted.
Hospice! I thank them beyond. I follow the rules as they are explained, first hospital, then rehab then hospice once admitted to alf.
So as soon as eligible he is on hospice and then died five days later.
Do I wish he could have been on hospice earlier, of course. I wish I could have not called emt in the first place, but for how long could I have left him on the floor?
The intubation seems to have been brief. He was in isolation icu and I never knew he was intubated until the bills came in. They said end stage but used another term that I only heard once, something like sudden inflammatory response.
I hope someone else can benefit from what happened here. I really don't feel like I had any other choice.
Abby: You did what you had to do and what most of us would have done one way or the other. It isn't like he lingered for months and now you wish you had done something else. Most of us probably would have had him admitted to the ALF long before you did, I know I would have had to do that because I could never lift or take care of a person over 6 feet.
I'm sorry you now have these bills to pay and I don't know what to say about that or how to direct you to the right people that can help you.
Abby, do you have an ombudsman anywhere in your health care system? Maybe the hospital? I've found them to be helpful. I would use the documentation you've posted here and send it to them. It seems reasonable to me that you should not have to pay for intubation, even though the ER acted as they have been taught.
When we were young & healthy we had wills and DNR's made out. Never gave any of it a 2nd thought and then, decades later I'm in a facility with 2 nurses, my husband having trouble breathing, getting oxygen and they ask if I want to send him to hospital. By then I knew that 911 would do everything to keep him alive & once in the hospital he'd be hooked up to everything, frightened if he was aware and for what?? They'd told me the night before that it was only a matter of time - but I didn't believe them, I thought he'd rally again. They had a DNR on file, I could have said 'yes' but thoughts were buried in my head & somehow, automatically, I said 'no.' He died peacefully, thank God. Did I have 2nd thoughts? Oh, yes, many, many times, but I did the right thing for him. Sometimes there are unforeseen circumstances as Abby* related, but it all boils down to the same thing. Give them peace, at all cost, give them peace. I don't know all the specifics of what was done or what it costs, but one things I do know: Abby, you did what had to be done at the time. That's all anyone can ask or expect. As for the bills.... I have no experience with that. But your story has given information & options to others--they will be grateful. Blessings to you.
Abby, under your other thread I have offered some advice but I would be happy to discuss your situation with you. I think I could help. I'll email Joan and have her send you my email address.
Thank you so much! I didn't get an email address from you via my email but want to let you know how helpful your post was on the other thread. I'll respond to you in more detail there.
Thank you all for your good wishes. Yes, over the last couple of days I had a full review with the insurance rep. Actually, there have been two reviews because I am one who calls again hopefully not to punish myself but to have information confirmed. Really I am sometimes calling more than once. Not to criticize anyone there but with the approach that I am not understanding and that is truthful.
Bettyhere*, although I have not been here for long I am determined to stay in case I can help anyone else. Blessings back to you.
It was really my own stress relief to share the above post.
As I understand it now, following many calls and inquiries, my husband verbally consented to have a "tube inserted to help you breathe".
I have to believe, since he was communicating with the emt's just before this, that this is what he said. He had also been intubated during other hospitalizations.
Each part of this experience has its own challenges to say the least.
Yes, Abby on your last statement--or I should say "understatement". I applaud you for wanting to stay here to help others. I pray Steve never has an emergency admission like your husband, but if he does, I've learned from your experience.
Abby as a result of your post I'm going to make a list to go over with our pcp about all you experienced. I know now is the time to get this done before we have an emergency. I think I have everything I need to avoid what you went through but I don't really know this. All these rules can make my head swim - even more.