Is it legal to remove a loved one from the ventilator if the family is in disagreement over it? - AgingCare.com

Is it legal to remove a loved one from the ventilator if the family is in disagreement over it?

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We are devastated. Wife found patient(her husband) in driveway with blood coming from ears and nose. He was refusing to go to hospital and was combative. Rescue personnel had to sedate him so he could be airlifted. A breathing tube was put in as a precaution. He suffered a TBI: fractured forehead, fractured eye socket, contusion in front and back of head (hospital said possibly contusions were caused by a whiplash of the brain). Hospital said they could not determine a medical reason why he fell/collapsed in driveway. He was diabetic, hospital stated sugar was a little high but not high enough to cause him to pass out. He was only 56 yr old. He was in the hospital for 10 days on the ventilator. During the 10 days he started wiggling his toes, doing thumbs up on command, shaking/nodding head to respond, would look directly at you when spoken to, repeatedly tried to get out of his bed; he would scoot to the bottom where there were openings below the side railings and put his legs over the side. Nurses had to keep pulling him back to top of bed. He had aspirated and developed pneumonia. He was given antibiotic. He was improving and never regressing. Nurse asked if he needed more pain meds and he shook or nodded his head. Once PT asked, do you feel like doing PT today and he shook his head no. I held his hand and talked to him, he looked directly at me. at the end of the visit I asked him to squeeze my hand and he did. It was a strong squeeze, not faint. Nurse said that he was breathing on his own during the day but that he struggled to sustain it when he was asleep. His wife decided on the 10th day to remove the breathing tube and she did not want a trach put in. His family requested a meeting with his team care doctors to discuss why the breathing tube is being removed at this time. It was stated breathing tube did not need to come out until the 14th day and then there was the option to put in a trach if needed. The team care doctors did not attend the meeting; it was a nurse practitioner and 2 palliative care personnel. My family and I had never heard the word palliative; at the time we did not know what palliative care was. We thought it was a recovery type of care. The NP conducted the meeting; the 2 palliative personnel barely spoke. The NP stated patient had improvement in the last 24 hours and the pneumonia was clearing up, and if a trach were to be put it, it was not known at this time if it would be permanent or not. Did not know if patient would or would not have any disabilities (physical or mental) at this time. If did, could receive therapy. NP repeatedly stated this is the wife's decision; she is his voice since he doesn't have one. Wife stated she and her husband had previously had a conversation and he told her he did not want to be on life support or in a nursing home. But to me, this is saying IF it is permanent, not if it is temporary which was not known at this time. If needed he could have went to rehab facility instead of nursing home. He did not have an advance directive. So this was just his wife saying they had a conversation. He was sedated throughout the 10 days for pain and due to the tube in throat. His wife stated she felt the tube was uncomfortable. I felt a trach would be more comfortable; it would give him more time to recover, allow him more time to get the sedation out of his system, recover from the pneumonia, give him a voice, allow him to drink and eat if possible, and he had been lying on his back for 10 days straight. During the meeting, our sister asked if they could wait the 14 days because her son wanted to see his uncle (he was out of town) and would be back before the 14 days were up. Patient's wife stated, "I'm not waiting for (nephew's name), or for anyone, I want the tube out today, right now." My sister started to cry and my other sister started shaking and had to leave the room. The NP asked the wife if she understood that meant denying him both oxygen and nutrients and she replied yes. Wife said she wanted nature to take its course; God would decide if he breathed or not. After the tube was removed, the patient asked for water and was given it with a sponge; he drank it. He said he wanted to get out of there, and he wanted to go to the bathroom, twice he looked directly at his wife and said her name. He was told he could not get out of bed; he had to use bathroom in bed and he would be cleaned after. He was coughing and trying to get the secretions out due to tube being in for 10 days. He again tried repeatedly to get out of the bed. He was moved to palliative care about 2 hours after tube was removed. Nurse immediately started giving him morphine; even stated had to give him 2 doses instead on 1 because he was squirming all over the bed. More morphine was given. His wife left shortly after the tube was removed. He asked for water and the nurse asked did he want ice and he did. He chewed the ice and swallowed it. He died 7-8 hr later when asleep.

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Recovering, it sounds like there may be some information that you do not know. If doctors felt he had a chance at even a somewhat normal life, they would not have removed life support for anyone.

I am very sorry for your loss.
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As someone who works in a neuro ICU..pallitative care is not normally called in unless end of life is being seen in the near future. It is not the same as hospice, but it does indicate comfort care,, as in keeping the patient comfortable as the end approaches. OK, sort of like hospice, but not looking months or years out. More as in short term.
As for the mention of no Dr at meeting, just an NP.. in our ICU they function as Drs, with a Dr overseeing them, think of them as Drs and do not be distressed. They report to the Dr and and he advises then and approves their input. They are very skilled and trained.
Also, as to the hour and a half before 911 was called... she may not have found him right away.. after all she probably had no reason to check on him until she felt the grilling was done. And you mention he was refusing to go with ems, and had refused to go in ambulance.. she may have been trying to calm him down, and see if he really needed care as he was refusing it. I hope you find peace in this.
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Recovering, you are grieving. Maybe in the anger stage? What you are feeling is very normal. Search out grief support. And realise that his wife is probably going through much the same. She must be wondering if she made the right decision and she has lost support from the rest of the family. For some reason she is not ready to talk about it. The more understanding and patience she receives will enable her to open up. Now she just is not ready. Respect that.
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Recovering, so sorry for your loss. Aspiration pneumonia isn't easy to fix. What happens is that food goes into the lungs instead of into the stomach. The patient would be doing a lot of coughing trying to bring up whatever was in the lungs. Plus the patient had major head trauma. Two difficult combinations. Death could be on the horizon sooner than later.

My Dad had aspiration pneumonia, the poor guy was so exhausted from all the coughing. He was on oxygen, was able to get up and move to a hospital recliner, joke with the nurses, etc. The hospital had Dad take a swallowing test where x-rays would follow to see where barium was moving within the body, sadly it was not good.

Thus, my Dad's organs were starting to shut down, and he was placed on Hospice care. Dad passed within a week. Morphine helped Dad not feel the organs shutting down, and it kept him calm.

My Mom had major head trauma from two falls where she hit her head on the kitchen counter. The last fall she became a "child", she could understand commands such as a child would. She knew my name. Then she became a "toddler". Eventually she passed due to organ shut down. Mom was given more doses of morphine [which were still very low doses] as she kept trying to crawl out of her bed. Her brain forgot she could no longer stand up and walk.

Please note, the wife makes the major decisions for her husband. And vise versa. If there is no spouse, then the children of the patient are next in line as long as the children are 18+ years. No children, then the parents of the patient if they are still alive and are of clear mind. No spouse, no children, no parents, then next in line are the patient's siblings if they are 18+ years.
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Recovering, I am sorry for your loss and can understand the concern you and your family have over the way your father's (?) death occurred. I've read your posts twice but still need to think about the situation, but I do think some very good points have already been made by others.

One thing I would like to suggest at this time is that there is in fact a way to get a copy of his hospital medical records. You can retain legal counsel (a medical malpractice firm would be the best choice) solely for the purpose of obtaining the records. An attorney can subpoena the records although I believe he/she would have to initiate a medmal action, as there would be no authority for him/her to get the records otherwise - the wife most likely would not sign a release for the records.

It might be hard to find one that will just perform this service, but legal counsel can obtain the records for you, and might even offer to have one of its legal experts review the records for adherence to standards of practice in the applicable medical fields.

It would probably cost you several hundred dollars for the retention as well as the records, but if an expert opinion is obtained by a physician, it might give you some peace of mind and/or clearer insight into the events that occurred.
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Recovering, I, too, am so very sorry for your loss. I've actually been on the other side of the issue. My husband and I were more close than I've ever been with ANYONE. We owned a business together, ate together, in or out, spent all of our precious "down time" together. He, too, was a wonderful and amazing man, so very witty and funny - and my very best friend. I loved him deeply.

He had been having a lot of back pain, and was being given muscle relaxers, z-paks, anti-inflammatory medication, etc. It only got worse and worse - too the point that he was barely sleeping at night.

Finally, we went to another DR who FINALLY ordered an xray at the neighboring hospital. We went over right away, had the xray, and started home. Before we were 10 minutes away, the hospital called, and said to come back immediately for a cat scan (don't know if I'm spelling that correctly or not, please excuse). We returned, he had the cat scan, and we went home. 3 days later, the DR called him and told him he had a large tumor between his heart and lung. My Husband asked him point blank how long he "had". The DR told him maybe ---- maybe 2 months to live. (Mind you, this entire conversation took place over the phone.) I've only ever seen my Husband cry twice. This was the second time. The DR did, however, direct us immediately to an oncologist -it was after hours, but the DR said he had spoken with the oncologist and he was waiting for us. Of course, we left immediately. I remember my Husband telling me to slow down before we wrecked, a bit ironic, when you hear the end of this...

He saw the oncologist, and was told to have a port put in so that they could start chemo and radiation. As soon as he had the port procedure, he immediately began to go down hill, and fast. We ended up back at the hospital after a visit to our other regular DR taking one look at him and calling 911. He never came out of the hospital. Less than 2 weeks, he was gone.

I'm not soliciting sympathy, or condolences, I'm merely trying to, as best I can, respond to your immediate question about being taken off the life support. I had never heard of a DNR, until one of the nurses asked me if we had discussed it. We had, but just kind of in passing, or jokingly if you will (which I now know was in poor taste to joke about something such as this, you would have just had to know my Mike to understand) not particularly about a DNR, but about being put on life support. He had told me he did not want to be put on life support, but again, it was not a sit down serious discussion.

So now, let me get to the point, as I was told. After the nurse explained a DNR to me, I told her that his heart DR would have to explain everything to me before I could make that decision. He was in ICU, and his heart DR was there because of his condition.

Believe me, I DID NOT WANT TO BE THE ONE TO MAKE IT! However, as his wife, I did in fact HAVE to make it. Not his Son he was ever so close with, not his mother, not his brothers or sisters, but me as his wife.

My M was asleep, on all kinds of pain meds, xanax, etc. The DR told me that he had already had several heart attacks, and that when he awoke, we could only expect to see him have yet another, but a seriously bad one, and that if I did not sign the DNR, that would have to do everything they possibly could to keep him alive, that it would be very traumatic, not only for M, but everyone, family included, and me of course as well. He would be put through hell, and would at best be put on life support, and there was a slim to noon chance he would survive that either. He told me that if that was the way "I" wanted to do it, for me to not sign the DNR. If I signed the form, they would give him enough morphine, other pain killers, Valium, Xanax, etc. to make him comfortable, and he would pass in his sleep. I do not know if a DNR was put into place in your case, or not. But I do know that I had to make that decision. It was the most God awful, horrible choice I have ever made in my life.

Our Minister, and wonderful friend, (she also wedded us in my fairy tale wedding), was with us through this entire experience. When I called her and told her how quickly and for the worst things had turned that morning (she'd been there with us everyday for a while, God Bless Her), she was there immediately. She took me outside, and I cried until I thought my head would explode, trying to talk myself into doing what I basically knew I had to do. "Why can't they just revive him, put him on life support, and bring him back and nurse him back to normal?" She said, "Well, if that's what you want, then don't sign it." And then I was back to, "But I don't want to put him through all of that, if their telling me it's next to nil that he'll survive?" She again said, "Well, honey, if that's how you feel, then sign the DNR." Wasn't an answer, but just her being there, wrapping her arms around me, and letting me cry my heart out was comforting. She knew, and I could tell she did, what a turmoil I was in.

I was so very torn, it all happened so quickly, so confused, and sooo very distraught, ANGRY, in a sort of denial I guess, and in total disbelief. How could this happen to my M??? and to me????? yes, I know that's selfish. Also, on the other hand, guilt was beginning to rear it's ugly head. Needless to say, I signed the d*mn DNR. To this day, (this was 5 years ago June 3) when I think about the whole thing, I still feel guilty, like I made the decision, that I basically killed him. Everyone tells me that I shouldn't feel that way, and I've gotten better about it. Not that I don't still feel horrible about his passing, and still in disbelief, but the guilt has lessened.

My point to this rambling story, is that I, as his wife, had to make that decision. As I said, I don't know the details of your situation, but I do know that the person who had to make that particular decision was me. I would assume, and only ASSUME, the same would apply to taking off of life support. (The Wife having foremost and final say)

You do have a lot of unresolved questions, and i feel sooo much for you, especially if you question the issue of money, and the circumstances/consequences of his fall. Also, one of your replies mentioned rallying just before the end. I too have heard of this, but did not experience it. I believed his heart DR, and still do, was very knowledgeable, and sincere. So, in putting my trust in him, my M didn't have a chance to rally, and I seriously doubt he would have in light of the constant pain, and how uncomfortable, sick, and totally dependent as far as every aspect, even the bed pan, and the help just urinating, that he was for that last week I stayed with him day and night.

Like I said, not exactly the same, but I do feel your sorrow. Especially if you and the family are so uncomfortable with the way everything was handled.

You've had a lot of good advice, some you wanted to hear, and maybe some you did not.

In one way, I agree with you, and would want answers, if only for some degree of closure.

On the other hand, there probably is a lot of pain on both sides. But then as one of your followers said, I don't know the dynamics of your family's relationship with the wife nor the relationship with the two of them. In my opinion, that would be a key factor.

Again, I'm so sorry for your loss, I feel your pain, and God willing, you will come to some sort of peace. I lost my Husband, my Best Friend- foremost-, our business, our beautiful home he bought for me and the two of us decorated together, my baby grand he got for me, and my life turned around 180 degrees. I'm now staying with my Brother in rural GA, as my life in Florida is no longer there. My Brother and Sister-In-Law have taken me in and have been a great influence on me. I've been going to Church with her, and building a better relationship with God. If you knew my background, that is a huge step for me. Anyway, I will keep you in my prayers, and hope with all my heart the closure and peace that you need will come for you.

Sorry for the long story,
God Bless You and Your Family
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Recovering, I am so sorry for the loss of your Dad. I too have lost both of my parents, and both had (different forms of) that last surge of life, right to the end, which makes it all the more difficult to accept and understand that they are indeed leaving us.

My Dad ad an autoimmune disease call PSP, it is sort of like Parkinson's, and he had problems with swallowing problems, therefore he had multiple bouts with aspiration Pneumonia, which ultimately took his life.

Our Dad gad been in hospital 6 days, he had been deeply unconscious for about the last 3 days solid. He had had 1 course of IV antibiotics, but the Dr's told us that he would likely not recover this time.

It was Me, the one who worked in Healthcare, that raised holy h*ll and demanded they give him more antibiotics, but he was truly shutting down, and hadn't even had a BM in nearly 3 weeks. I had to go along with what our Mom and the Dr's knew best, heartbroken that she was.

We called in the Catholic Priest to give him the Rite of the Sick (Last Rights), with all 6 kids and Mom in the hospital. Early the very next morning, I walked into his hospital room, and Dad was sitting up, drinking cuppa tea, my handsome, wonderful Perfect British Pop's, big smile and so happy to see me.

I told Dad we had had the Priest in, he laughed, but he was glad to hear we had done that for him. He said "you're not rid of me yet"! I was happily optimistic!

One by one, my Mom and 5 siblings and various Grandkids were in to see him that day, Hmmm, maybe he Would beat this One More Time!

The next day was Mother's day. A day we always spent as a family at the horse races. Our Mom decided she wanted to spend the day alone with Dad. He was quiet, calm, and a bit sleepy again. After the horse races, we all popped in to see him in hospital, said goodnight and took our exhausted Mom home. At midnight, the Nurses called our Mom to say our Dad was failing, death looked imminent, and we all headed back down to be with him. We are a very close family, and wanted to be with him in his final moments. The Nurses was right, with all our hands on him, Our Dad slipped away quietly, and even after that rally, I honestly thought he might pull through once more.

He was the very best Man ever in my life, I miss him dreadfully, but he is forever in my heart.

Loss is so incredibly painful, it makes us second guess all of our decision making processes. I do not pretend to know you or know your family dynamics, but we never know how a husband and wife communicate these sorts of things together. It just might have been his time, and his wife knew that.

I agree with FREQUENT FLYER, your Step-Mom is suffering too, no one wants to be the one to make these very difficult decisions, but she felt that she made the right one, and should have your support on this. Everyone is grieving. I'll bet you would feel better if you let this go, and supported one another in your grief. Again, I'm so sorry!
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So... what investigations have there been into the cause of your brother's injuries and tragic death? Forgive my ignorance, I'm in the UK, but will there be an inquest?

The thing is. To answer your first direct question, given that your brother was being treated in hospital and properly attended by qualified, professional personnel, I think you have to assume that the correct legal processes were adhered to.

But that's not really the issue, is it? The whole history must leave you all with countless unanswered questions; so I'm just wondering what system there is that you can access to get some sort of coherent narrative.
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We would like to know a valid medical reason also. In meeting we were told he was improving and when family asked did he have a mental disability NP said they did not know at this time. She said, CAT scan & x-rays can reveal where fractures and contusions are but cannot reveal the functioning of the brain. I asked how could it be determined. NP said he could be evaluated after the breathing tube was taken out. I asked how would the evaluation be done and NP said by his responses. But he was not evaluated after tube was removed. I'm assuming because wife said to deny oxygen and nutrients and they knew he was going to die. His family all felt he was going to be fine because he was asking for water, saying he wanted to get out of there and wanted to go to the bathroom and trying to get out of the bed, and recognizing his wife by saying her name. We were not prepared for this meeting. We had no idea his wife had already signed for removal of ventilator and denial of trach. His wife left shortly after removal of ventilator. We were told his organs were working, and he was breathing on his own when awake. He could not sustain his breathing when asleep. NP said they did not know why he couldn't sustain breathing when asleep. It could be sedation, pneumonia, or something with the brain that had not healed yet. They just did not know at this time. It could be a combination of all 3. We are not entitled to his medical records. We just want answers as to why the NP or his doctor felt they agreed with the wife to take him off ventilator and not put in a trach when they knew he was struggling when asleep. Family has had no contact with wife since and was upset at her decision. We just want to know what the reason was and it was not explained to us. We asked many questions in the meeting and always got "we do not know at this time". I do not understand if there was a medical reason, then why was it not stated to us in the meeting? We just want answers. We are feeling guilty over not being more assertive in the meeting but were told repeatedly it was the wife's decision, so we felt we had no rights.
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Recovering, it is very common for someone who is seriously ill/injured to rally to a point where they are talking, joking, eating, and even walking for a day or more.... then the person returns back to the critical condition they had just days before. Both of my parents went through that.

This is usually our first rodeo when it comes to our parents getting hurt, but the hospital has been on this rodeo thousands of time. And science isn't always perfect. Medical changes can happen in an instant.

I bet your Dad and Step-Mom had talked about this situation many time prior to your Dad falling, on what to do. Dad probably decided he didn't want to be hooked up to any machines, and that was HIS CHOICE. And your Step-Mom was following his request.

Too bad you are distancing yourself from your Step-Mom, here she lost the love of her life.... this wasn't the retirement she was expecting. And you had lost your Dad. The two of you should be comforting each other.

I can't recall if you had mentioned what was on the death certificate as the cause of death. That would tell you the valid reason.

I believe what you and your family are going through are the "what ifs", we all go through that. When my Dad passed from aspiration pneumonia I kept thinking why didn't I take Dad to the doctor earlier when I first heard him coughing. Then I had to tell myself, the case was very serious, even if I did take Dad in earlier, he was still going to pass away when he did.
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