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Ryogogen Asked December 2015

Friend survived being taken off life support and now is in Hospice and not getting food or water. Advice?

I am in dire need of answers... my friend is in very bad shape. So many things wrong that its hard to go into detail. She needs a pacemaker but she currently has sepsis so they can't risk operating on her. She also has fluid around her heart and in her lungs due to shooting up pills.

She flatlined on Nov 17th and they managed to revive her. They didn't expect her to survive for very long but she did. Then a catscan on Nov 26th revealed that she was brain dead. Her mom then decided to take her off life support on Nov 29th since she was never going to get better.

They took her off everything on Nov 29th at 7 PM and she was breathing by herself... She wasn't brain dead. She even opened her eyes and was looking around and tried to talk. She looked at everyone and cried. After all of this they didn't think she'd last long off life support...

She did. But despite overcoming all of this they decided to move her that same day just two hours later at 9 PM to a Hospice center. I was furious at this decision as she had just got off life support. But I figured they'd still try and help her get better...

I was wrong. It is now Dec 1st 1:06 AM and she hasn't had anything to drink or eat! I didn't think they wouldn't be giving her the feeding tubes here. They literally gave up on her despite how far she has made it! She is so sedated on morphine that she's being kept knocked out so she can't eat/drink by herself. Her mother and father both want her to be fed since she is fighting and she was begging to have a second chance at life before she originally flatlined.

What am I able to do? This is absolutely ridiculous and I need options!

yogagirl Dec 2015
Sorry for your loss. Prayers.

staceyb Dec 2015
Ryogogen, I am so sorry for the loss of your dear friend! You did Everything right, questioning the Drs as to what was truthfully happening with your friend. You are an inspiration, and at such a young age! Your right, Love your friends and family members a little bit tighter, and tell them that you Love them, even in rough times. You hang in there, and I thank you for coming back to share your thoughts and experience. Take care of your self, everyone would be lucky to have a great friend in times of need, like you! Remember that there is life everlasting, and that your friend is in a better place now, and no longer suffering. Do your best by her, learn from every experience in life, and have a sfe and Merry Christmas!

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Christine73 Dec 2015
I'm so sorry for your loss and grief. I will do something kind today in April's name.

gladimhere Dec 2015
Ryogogen, I am sorry for the loss of your young friend. Keep her in your heart always.

realtime Dec 2015
Ryogogen, You're an inspiration. I'm so sorry about your friend. You did what you could. You'll keep thinking of the coulda shoulda sort of things for awhile --- I recently lost a good friend, and I know --- but after all things are considered, you were there for her, and that's what counts. You're right --- time to hug each other, remember the good times, make the world a little better for someone. Hugs to you. C.

Ryogogen Dec 2015
She ended up passing today around 2:30 ;(... her body just couldn't take it anymore... You're in a better place now April, away from all the pain and suffering. I'll always keep you in my heart.

She originally went in for fluid build up around the heart and in the lungs along with a bad infection that turned out to be sepsis. She had been in there in the past about the hear issue but she blew it off and didn't take it seriously. Apparently when you shoot up pills a substance that would normally pass through if taken orally ends up getting deposited in your lungs instead. This leads to the formation of sores in the lungs that produce pus. Not sure what the condition is called, it was just so much to take it at once. She also ended up getting pneumonia, they found a heart valve that wouldn't close and she needed a pacemaker but they couldn't operate because of the sepsis. It was like everything that could go wrong did.

They aren't positive on what caused her to flatline. They initially wouldn't give her any medication for pain because her blood pressure was too low and pain medication could hurt her. A less than reputable friend that was there said he would give her something. Despite that the hospital staff still left them alone together and to my knowledge 2-3 hours after he left she flatlined. There were no cameras so there isn't proof that the individual did anything. It is very likely that he didn't do anything as with her condition something like that is likely to happen.

I visited her yesterday at the Hospice and she seemed to be doing okay despite not having any nutrition or fluids. She was always such a fighter. I was there from about 11 PM to 3 AM. I tried using those little sponges they have to moisten patients mouths and lips to give her some water. Her tongue was so swollen though so I could only really just get her lips moist. I just wanted to do anything for her to increase her chances because she begged for a second chance...

I thank you you all for your answers and condolences. This is a devastating experience for me... I never imaged having to watch such a young friend of mine die. We weren't seeing eye to eye for a while because of her lifestyle choices and the fact that she was using me at times so it was one of those situations where you have to love someone from a distance...

Don't just give me your condolences though. If any of you do anything, I just want you to love more. Hug your family and friends a bit tighter next time. Make a strangers day with a compliment and a smile. Feed a homeless person. Make a positive change in the world, no matter how small. We all have super powers, sometimes it just takes a smile to make them come out. It's so easy in this day and age to forget about those things. We all think we're invincible, but the truth is so cold...

Christine73 Dec 2015
They have the right to change their mind and have her taken to the hospital. a doctor has to give orders for a person to go into hospice. You can get a second opinion; that's an option if it will make you feel better. Get her parents to request it. If she is brain dead, however (EEG will tell), you should allow her to die peacefully in the hospice. there's no coming back from brain dead. I'm so sorry this has happened to your friend.

assandache7 Dec 2015
Oh I want you to know that I am thinking of you and especially your friend... Hopefully the parents will let you in on decisions...

Good luck and a giant HUG to you..

staceyb Dec 2015
Ryogogen, I am so sorry that you are going through this sad sad situation with your friend! I hope that you can be involved in a interview with her parents and the Dr's, and hopefully they can explain exactly what her heathcare options are, and if there is any more that they can do for her other than comfort care. Be the good friend that you are, and give er as much Love and comfort that you can. Wipin/swabbing her mouth with those little water sponges help to keep her comfortable, and assisting the nurses and her parents with being in her hospital room, helping to turn her side to side, as well, with the nurses advising you of course, and just letting her know how much you Love her and how much your friendship has always meant to you will also help to give you peace of mind. Remember that if her destiny is to pass on, then please know that she will be going to a better place, and she will no longer be suffering. At some point Sweetie, we have to give it up to God, and he will take care of her, believe that! You hang in there, and let us know how you are doing as well! Take Care!

surprise Dec 2015
At least you know she's not suffering if she's on morphine. When the body is dying, food can't be digested and is painful to have it in the tummy, and with dehydration, just having a moist mouth makes a person more comfortable. Morphine makes a person struggle to breathe less which keeps them from being as afraid as they could be.

And you are at her side. Hold her hand and let her know that you miss her terribly and will always remember and fight to prevent drugs from snatching another young person away from the life that should have been theirs. It's a sad situation that she and her parents were into drugs. Hospice makes the situation as good as it could be.

GardenArtist Dec 2015
FF, this is what I think as well - she O'D'ed and was put on life support.

freqflyer Dec 2015
Ryogogen, some questions to help me understand this, why was your friend put on the life support to begin with? You had mentioned she had been shooting up pills? What does that mean? Did the misuse of pills caused the heart condition? And that is why the heart had stopped? Was she on life support when that happened?

The doctors know far better then we do when one's life is now limited. Yes she opened her eyes and tried to talk, but was it a normal brain activity or just a body reaction? People in comas will make body moments and open eyes but that is muscle activity not produced by brain activity.

This is sad as your friend is way too young to be going through this.

GardenArtist Dec 2015
This is truly a very sad situation... a daughter and parents who both have drug problems, the daughter in a near death state and the parents not really understanding what's going on.

Whether the daughter can recover is an issue that seems to be dependent on the parents understanding and making the appropriate decisions, and it seems they really don't and aren't. As a friend I don't know what you can do except to ask for some kind of outside intervention, and I'm not even sure what that would be.

If she were older, Adult Protective Services (APS) might intervene; I don't know if they become involve in these kinds of situations though. If the daughter were younger and a juvenile, Probate Court court intervene on a neglect petition.

In order to get intervention, someone would have to request it, or notify authorities. And it doesn't seem as if the parents would do this. The only thing I can think of is to get advice from the local police to see if there is anything that can be done to override the decisions of the parents, such as the process for getting a conservator or guardian for the daughter. However, the fact that they addicts might mitigate against the advisability of that, and apparently there's no money (other than for drugs) to pay for a guardian or conservator.

You could consider reporting the parents for drug use, which might take them out of the picture and then a guardian could be appointed, but these things can take time and it seems the daughter is in a critical stage with parents not really understanding what's going on.

Just thought of something else - a substance abuse counselor might know of ways to intervene. Perhaps the police or even a social worker at a local hospital could help you find one.

As to a second chance, it seems she's in CHF and may have a pleural effusion in addition to the other conditions, and she's probably immune compromised because of the drugs. If she does survive, what can be done to ensure that she goes into rehab and gets away from the parents? Otherwise, this situation could repeat itself again and again.

realtime Dec 2015
Dear Ryogogen, I don't have anything to add to the good advice you're getting from the other members of the forum, but I want to say what a wonderful friend you are, and that I'm thinking of you and your friend in hospice. C.

cwillie Dec 2015
I think there is a misconception that "unplugging" the patient leads to immediate death. That may happen, but often the body can struggle on for an extended period of time off life support, especially a young, fit body.
Withholding food and water at end of life is not done to be cruel or to hasten death, it is done because the body approaching death can not handle the food and water. The doctors and hospice obviously felt that there was no hope that your friend could recover and are acting accordingly to try and ease your friend's final days. Are they wrong? Well, we hear of people who have come to the brink, even crossed over, but have pulled back. If you get the second opinion, no matter what the outcome, you will be able to have some peace of mind.

lsmiami Dec 2015
A very sad thing to go through, heart breaking for the loved ones. There are no good options here, unfortunately, she will not get "well". The folks at hospice actually understand the process of dying better than those of us who do not deal with this on a daily basis. Recovery is not an option - pain management is.
If she is still capable of some emotion, hold her hand when she awakes, speak to her and be there for her and each other. Prepare yourself to let go.
May God bless you and strengthen you all through this difficult time.

jeannegibbs Dec 2015
I am so sorry that you are going through this, Ryogogen. It is not something we expect young people to face. (Not that it is easy at any age.)

I have gone through hospice with both my mother and my husband. Each time enrolling involved an interview of about an hour. All aspects were explained to me. I'm a little surprised that her parents are now so clueless about what they signed her up for.

Hospice is for persons that medical science has "given up" on -- that is, they can't think of more to do to get this person well. They feel the person is dying. Hospice cares for the dying to ensure some dignity and comfort and away from the hectic atmosphere of a hospital. Sometimes the medical opinion is wrong. My mother appeared to be dying, but in three months she was doing so well she left the hospice program. That was more than a year ago. My husband, on the other hand, died sooner than hospice expected him too. No one can give an absolutely accurate prediction of when death will occur.

Could it be that the hospital just didn't want to deal with her? In the sense that hospitals are about healing and they didn't think there was any chance of healing her they probably wanted her where something could be done for her, namely keeping her pain-free and comfortable. I doubt that Medicaid's coverage had anything to do with the decision. (Remember, you were hearing this from people who didn't know what they signed their daughter up for and don't know how old she is. Not exactly a reliable source.)

Of course you don't want her to die. You don't want her to live as a "vegtable." You urgently want her to have that second chance. I do too, and I don't even know her. I am glad to know a second opinion has been asked for. That is about as much as can be done at this point. After the opinion is received there may be some additional decisions to be made. I hope you can be influential with her parents at that time.

Please let us know how this progresses.

Ryogogen Dec 2015
Thank you for the reply. She is only 20 years old. I am a very close friend of hers. I am at the Hospice as we speak and am talking with her father who is here as well. He apparently did not realize that they didn't have feeding tubes available at hospice or that you send patients here to die peacefully... same with the mother. They aren't the brightest people. Drugs are a factor in their life... they didn't even know what their freaking daughter's birth date was when filling stuff out! I'm not joking either, they were both off by three years...

From what I have gathered her mom and dad are working on getting second opinions on her in the morning. She keeps defying everything the doctors say and is fighting against the odds. She was supposed to be completely brain dead according to the catscan and she isn't! I can't not be involved in it, they're both incompetent druggies. They're a huge contributing factor to her going down the path she traversed... although I can't personally make decisions they know how much she valued me as a friend.

I am worried about her coming out as a vegetable... but with the amount of progress she's been making it's wrong to just give up on her, especially when she was begging for a second chance before everything turned south!

Is there a possibility that the hospital didn't want to deal with her and sent her here? From what her dad is saying her medicade wouldn't cover anymore expenses. I'm so new to this stuff and just so worried and stressed. I'm only 23 and I never imagined having to deal with something like this so soon in life.

gladimhere Dec 2015
I am confused. How old is this person? What is your relationship? Without a POA only mom and dad can make decisions. If they want her tube fed then why did they move her to hospice? I have a hunch that you don't know all of what is going on. If your friend flat lined she was not breathing. But the damage to the brain, especially with sepsis could be quite significant. I had a friend go through exactly something like thisma year ago. I understand your concern. I had tolet mt friend's family figure out what to do. I did not want to interfere in that process at all. It was none of my business.

Sepsis is quite serious and will cause organs to fail one at a time. This is exactly what I went through a year ago. And when they removed him from life support they did not think he would survive either. But, he lasted a week and a half. Had he survived, he would have been in a vegetative state the rest of his life. HE would not have wanted to live like that.

So, just be there for your friend's family, offer them support in any way you can.

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