Mother passed away July 2008.

[fordwheeler]

What is the name of your state (only U.S. law)? California

This may be a little long. But, I want to give a very clear picture of what occurred. I will start with February of last year my mother got sick with some kind of cold/flu. After a couple weeks of not getting better and not being able to breathe. She finally drove herself to her doctors office on a Friday afternoon. Her doctor gave her an Oxygen tank and sent her home. By Monday my mother was in Hospital in ICU. Her lungs had filled with fluid, she still had a hard time breathing. She spent a few weeks there and she pushed the doctors to let her go home. Soon the tanks weren't enough for her. She now had a machine for her Oxygen. After about a month of that she was back in the hospital where she spent the rest of her days. She kept needed a higher amount of Oxygen to breath until she was on the face mask type machine. We the family couldn't understand why she kept getting worse and worse.

My mothers boyfriend about a week before she passed asked the nurse why she wasn't getting any better. She told him and I quote, "that's the way the disease progresses." He asked her what disease and she gave him some handouts on Pulmonary Fibrosis. This is when we knew she was dying. The doctor never told her or anyone in the family what she had and that it was terminal. He had many opportunities and when we asked he evaded the question altogether. Saying she is a very sick woman and nothing more.

When I received the death certificate I saw that 7 months before the doctor diagnosed her with "Pulmonary Fibrosis". Keep in mind, she was never told or the family. She should have been told that she was diagnosed and the severity of what it was.

I guess you can probably tell what I am most frustrated with. We should have been told about what she was diagnosed with. And I feel that even though she would have died anyway, There could have been some preventive steps taken early on if we had known to give her more time.

Now, I have struggled with whether I should or could pursue anything on this. Which is why I am here? If there are any other questions I have not answered please ask. Thanks.

-PatWhat is the name of your state (only U.S. law)?

[IsabellaSoriano]

okay, Pat.

you stated mom was diagnosed. so she DID know. she chose not to tell you. and from your own wording, the staff knew as well.

mom was never obligated to tell you or the boyfriend anything. and neither were the doctors.

i am sorry for your loss, Pat.

[Proserpina]

Originally Posted by fordwheeler

What is the name of your state (only U.S. law)? California

This may be a little long. But, I want to give a very clear picture of what occurred. I will start with February of last year my mother got sick with some kind of cold/flu. After a couple weeks of not getting better and not being able to breathe. She finally drove herself to her doctors office on a Friday afternoon. Her doctor gave her an Oxygen tank and sent her home. By Monday my mother was in Hospital in ICU. Her lungs had filled with fluid, she still had a hard time breathing. She spent a few weeks there and she pushed the doctors to let her go home. Soon the tanks weren't enough for her. She now had a machine for her Oxygen. After about a month of that she was back in the hospital where she spent the rest of her days. She kept needed a higher amount of Oxygen to breath until she was on the face mask type machine. We the family couldn't understand why she kept getting worse and worse.

My mothers boyfriend about a week before she passed asked the nurse why she wasn't getting any better. She told him and I quote, "that's the way the disease progresses." He asked her what disease and she gave him some handouts on Pulmonary Fibrosis. This is when we knew she was dying. The doctor never told her or anyone in the family what she had and that it was terminal. He had many opportunities and when we asked he evaded the question altogether. Saying she is a very sick woman and nothing more.

When I received the death certificate I saw that 7 months before the doctor diagnosed her with "Pulmonary Fibrosis". Keep in mind, she was never told or the family. She should have been told that she was diagnosed and the severity of what it was.

I guess you can probably tell what I am most frustrated with. We should have been told about what she was diagnosed with. And I feel that even though she would have died anyway, There could have been some preventive steps taken early on if we had known to give her more time.

Now, I have struggled with whether I should or could pursue anything on this. Which is why I am here? If there are any other questions I have not answered please ask. Thanks.

-PatWhat is the name of your state (only U.S. law)?

I'm also sorry for your loss.

Are you thinking that had the family known you and they would have persuaded the doctors to try a different treatment than was given? Please bear in mind that Mom's family do and did not have any inherent right to be told anything at all unless Mom had designated a guardian or medical Power Of Attorney.

Even if the opposite was true though can you prove that Mom wasn't told of her diagnosis and/or prognosis?

[lealea1005]

I am sorry for your loss.

I agree with the above posters...you really do not know whether your Mother knew of her diagnosis and chose not to inform the family or her boyfriend. Her Physician, and the staff at the hospital, are not permitted to discuss ANYTHING regarding the medical care of a patient without their specific written permission.

I recently lost a friend to pulmonary fibrosis, so I understand your frustration. She also chose not to tell anyone than immediate family about her illness until it became evident to her friends in the health care community that she was gravely ill. Until that time, all we saw was her weight loss, that she had a constant dry cough, and started making excuses so she didn't have to go outlet shopping (something she loved to do) or be outside.

Unfortunately, there is no cure or anything other than experimental treatments at this time. It's difficult to properly diagnose because the cause isn't fully understood. After a while, from all the scarring inside the lungs, oxygen won't help. The scarring prevents the proper exchange of oxygen and carbon dioxide in the blood. Once that happens, the lungs will fill with fluid. The patient's organs then start to fail.

Hope this information helped.

[insurance08]

My mother refused to tell me as well. I figured it out due to the fact she never would get better. As long as I was around she did her treatment. As soon as I fly back 3000 miles away. My mother would discontinue tx, as well as meds. Her logic was to spare me the pain of her being prepared to die. Yet, she made sure I knew exactly what colors to have for her funeral. I miss her dearly.

[fordwheeler]

I guess I wasn't very clear on this. She did not know. The entire time she was in and out of the hospital she kept asking us (family) to find out whats going on because her doctor wasn't saying anything. She kept asking us over and over if she was dying and why she was getting worse. We honestly could not tell her cause we knew nothing. Keep in mind the thought did cross my mind that she chose not to tell anyone. If that was indeed the case I wouldn't be typing on this forum right now.

On another note. I completely understand how this disease progresses. And if we had known there are some precautionary measures that could have been taken. I have read and heard of people whom had this disease and have lived beyond 10 years after diagnosis.

[Proserpina]

Originally Posted by fordwheeler

I guess I wasn't very clear on this. She did not know. The entire time she was in and out of the hospital she kept asking us (family) to find out whats going on because her doctor wasn't saying anything. She kept asking us over and over if she was dying and why she was getting worse. We honestly could not tell her cause we knew nothing. Keep in mind the thought did cross my mind that she chose not to tell anyone. If that was indeed the case I wouldn't be typing on this forum right now.

On another note. I completely understand how this disease progresses. And if we had known there are some precautionary measures that could have been taken. I have read and heard of people whom had this disease and have lived beyond 10 years after diagnosis.

Which precautionary measures are you talking about? Do you believe that the family could have suggested something the doctors may have missed or not considered?

The average life expectancy is still only about 2/3 years after diagnosis though in all honesty it's moot at this point; even if you could prove that Mom was not given the diagnosis (which I believe would be virtually impossible to do) your burden would be to show that had the family been informed, Mom would have lived for a considerably longer period.

Based upon what you've written I do not believe this would be possible.

[fordwheeler]

The only things I think that could have been done is as follows. Family staying away if they were sick with any kind of illness. As the damage to her lungs is permanent. We could have warn masks around her and so on. We could have forced arm the Doctor to take care of her right away when she became sick with this cold/bug. Instead of letting him send her home with an Oxygen tank.

I know that precautionary measures may have only increased her life by a few months. BUT, what I am most angry about is that she was not told and we the family were not either. There are so many things that could have been planned and taken care of if she and us (the family) had known. Now I am not sure if a doctor is obligated to tell the family of the patient. I have had other family members die from Cancer and when they were diagnosed that it was terminal the Doctor brought all the immediate family in to meet with them and the patient to explain everything. I had expected the same, not a doctor that would just totally ignore the questions we asked.

I will openly admit I have a huge problem with Doctors and will not see them if my life depended on it. I don't trust them at all, never have probably never will. From my experience they are too quick to medicate instead of resolving the issue at hand. So, that said when I am dealing with them I am always asking questions.

As clarification, I do not have written proof that she was not told. Only witnesses that were with her during her appointments. Either my Grandmother or her boyfriend were with her during all her appointments.

[Proserpina]

Originally Posted by fordwheeler

The only things I think that could have been done is as follows. Family staying away if they were sick with any kind of illness. As the damage to her lungs is permanent. We could have warn masks around her and so on. We could have forced arm the Doctor to take care of her right away when she became sick with this cold/bug. Instead of letting him send her home with an Oxygen tank.

It's incredibly unlikely you would have been able to force the doctor to do anything at all he did not deem necessary. And you openly said your Mother PUSHED the doctor to send her home.

I know that precautionary measures may have only increased her life by a few months. BUT, what I am most angry about is that she was not told and we the family were not either. There are so many things that could have been planned and taken care of if she and us (the family) had known. Now I am not sure if a doctor is obligated to tell the family of the patient. I have had other family members die from Cancer and when they were diagnosed that it was terminal the Doctor brought all the immediate family in to meet with them and the patient to explain everything. I had expected the same, not a doctor that would just totally ignore the questions we asked.

As the family you do not have an inherent right to your Mother's information, or to be told anything at all.

I will openly admit I have a huge problem with Doctors and will not see them if my life depended on it. I don't trust them at all, never have probably never will. From my experience they are too quick to medicate instead of resolving the issue at hand. So, that said when I am dealing with them I am always asking questions.

As clarification, I do not have written proof that she was not told. Only witnesses that were with her during her appointments. Either my Grandmother or her boyfriend were with her during all her appointments.

I'm sorry for your loss, but nothing wrong was done here.

[lealea1005]

The only things I think that could have been done is as follows. Family staying away if they were sick with any kind of illness. As the damage to her lungs is permanent. We could have warn masks around her and so on. We could have forced arm the Doctor to take care of her right away when she became sick with this cold/bug. Instead of letting him send her home with an Oxygen tank.

The oxygen is the treatment for the disease. It's not so much that she had a "cold", her symptoms were most likely a progression of the disease process. There was nothing.....NOTHING...that could have been done to stop it.

I know that precautionary measures may have only increased her life by a few months. BUT, what I am most angry about is that she was not told and we the family were not either. There are so many things that could have been planned and taken care of if she and us (the family) had known. Now I am not sure if a doctor is obligated to tell the family of the patient. I have had other family members die from Cancer and when they were diagnosed that it was terminal the Doctor brought all the immediate family in to meet with them and the patient to explain everything. I had expected the same, not a doctor that would just totally ignore the questions we asked.

A family will be brought in ONLY when the patient gives the Physician specific permission to do so. Your anger is a normal part of the grieving process and totally understood but misguided.

I will openly admit I have a huge problem with Doctors and will not see them if my life depended on it. I don't trust them at all, never have probably never will. From my experience they are too quick to medicate instead of resolving the issue at hand. So, that said when I am dealing with them I am always asking questions.

You're entitled to your opinion, even if it is shortsighted and, IMHO, unwise.

As clarification, I do not have written proof that she was not told. Only witnesses that were with her during her appointments. Either my Grandmother or her boyfriend were with her during all her appointments.

Were they actually in the treatment room with your Mother and her Physician? If not, then you really do not know what was discussed.

I truly hope you are able to work through your grief. Have you thought about a support group?

[fordwheeler]

Were they actually in the treatment room with your Mother and her Physician? If not, then you really do not know what was discussed.

I truly hope you are able to work through your grief. Have you thought about a support group?

In answer to the question above, Yes, they were in the treatment room with her for all her appointments. And Yes, I have gone to support groups in the past and I always found it easier to deal with in my own way. I was forced to see a counselor when my father passed away (see below) and it just amplified the loss. I always left angry and more hurt than before.

It's incredibly unlikely you would have been able to force the doctor to do anything at all he did not deem necessary. And you openly said your Mother PUSHED the doctor to send her home.

She was feeling better and wanted out of the hospital. She was so angry that the nurses would never help her. So, she felt she was better off at home. I was trying to get her transferred to a better hospital. The hospital she was in isn't the greatest place anyway and are well known for their poor treatment towards patients.

And as for my opinion being unwise. I will further explain my reasons. When I was 9 years old I also lost my father, he was 35. He complained of chest pains went to the hospital the doctor sent him home saying he was only having gas pains. In the parking lot he started coughing up blood. Once back in they put him in a room and no one checked on him for an hour. By the time they got to him he was gone, died of a heart attack. I also lost a niece at 2 months old because of a Doctor prescribing 2ccs of a Phenobarbital 3 times a day. This I know could have been one hell of a malpractice suit considering they use this stuff to put dogs down. 2ccs is enough to kill a large dog. Yet alone an 8lb baby. So, I have developed a deep untrust towards doctors because of all this.

I guess I am still grieving over all of this. BUT, you never really get over the loss of someone close to you like this. You just learn how to live without them. I waited to do or try anything until I was no longer angry about my mothers situation. I have to do it with a clear mind. And I still feel it is a doctors obligation to tell the family. My question was mainly to find out if there was any laws on this. From what everyone is saying I had no right to know and that doesn't seem right to me. If my mother were told she was dying she could have had all her affairs in order and she was denied that because of not being told. So, I ended up having to go to court and do the probate process. I am still planning on writing a formal complaint to her doctors organization to express this. Anyway, enough of me ranting.

[Proserpina]

I also lost a niece at 2 months old because of a Doctor prescribing 2ccs of a Phenobarbital 3 times a day. This I know could have been one hell of a malpractice suit considering they use this stuff to put dogs down. 2ccs is enough to kill a large dog. Yet alone an 8lb baby. So, I have developed a deep untrust towards doctors because of all this.

Just one thing - several years ago we had a yorkie with severe issues; he weighed about 7lbs dripping wet. His pheno rx was 2.5 ccs 3 times/day. Are you sure you're are talking about phenobarbital? Pentobarbital is used to anaesthetize animals....pheno is used to treat seizure disorders

. And I still feel it is a doctors obligation to tell the family. My question was mainly to find out if there was any laws on this.

I understand how you feel - but your mother's right to privacy by far outweighs your feelings on the subject.

From what everyone is saying I had no right to know and that doesn't seem right to me. If my mother were told she was dying she could have had all her affairs in order and she was denied that because of not being told. So, I ended up having to go to court and do the probate process. I am still planning on writing a formal complaint to her doctors organization to express this. Anyway, enough of me ranting.

Good luck to you and your family, and may you find a measure of peace.

I understand what youa re saying and you are very upset about this. Normally speaking a doctor will tell you if a parent is terminally ill, At least my dads doctor did. I guess it depends on the doctor. But, the doctor wasnt my fathers problem it was his sisters, in short they lied to me the whole month about how bad off he was, and when youa re in a coma and not moving I would say thats bad. But the doctor told me that he wasnt going to make it. i knew this already, he had lymphoma and this was the 2nd time in 5 years,He died from a bloodinfection that he got there. i went through hell that year trying to get everything done and straightened out. His sisters stole thing out of the house. have you ask her friends that were in there with her? I would think if she would have known this that she would have started talking about it or making preparations ahead of time. i can see why you dont like doctors given to what you have been through. No one is sure what they would do though in that circumstance, till it happens anyway. I would trust my doctor to tell me though and he would given to how he is. I wouldnt tell but about two people though, and that would be my husband and bestfriend, probably bestfriend first, because he would be the nearest one in driving distance from my doctor, and I would have to stop there and talk to him before I could drive home, just so he could calm me down.

I am sorry for your loss, because I know you feel like now you ahve no one. i feel like that also. my mom was killed in acar accident, a cop hit and killed her going 100 mph, and she wasnt even in the road she was sitting in a drive way, delivering newspapers. She always pulled in to this mans driveway every morning, and would throw his paper because thats what he asked her to do. the cop came down there racing with another cop and went to pass him and locked down his brakes he skidded 89 feet dead lock down, left marks in road for years, and then he hit her and sent her 86 feet down the road and turned her car around the opposite way facing the road, on top of his. it killed her instantly and her little dog that she took with her. She was my best friend and mom, and it was devastating to me for along time and still is. I now have no one to go and see and talk too. She loved to decorate for all holidays. Now what I decorate is a headstone, for the two of them. So yeah I know your loss and its something you will never forget. but because you will always wonder if she knew about it or not. I will always wonder if my mom had a heartattack first after seeing him coming into her. Its just one of those things that you will never know. they should have did something for your dad and never left him alone.

[fordwheeler]

Alright, I am officially frustrated with this advice forum. I understand my Mothers privacy. BUT, why would my mother sit there and ask us over and over again for the last 6 months of her life what she had and why she wasn't getting better? And she kept asking us to tell her and I qoute, "if I'm dying you really need to tell me."

I can beat this forever. It is something that will haunt me the rest of my life.
Privacy is one thing, not being told is another. For example: if doctor tells me I have terminal cancer I can make decisions that would ensure my family was taken care of. Plan for funeral, etc. So my family can grieve in peace. My mother was denied this and frankly, it pisses me off. I wanted to strangle this doctor. I and most of the family as well.

So far no one on here has blatantly answered my questions. Other than saying that I had no right to know. There may not be anything I can do about it. But, I can't just let it go without trying. Thanks everyone.