stand4hope Posted June 22, 2004 Share Posted June 22, 2004 Hello everyone, I need some advice about my dad. I have two questions coming at the end of this post: 1. What do you think about withdrawing the life support, and 2. For any doctors or nurses online, what to expect as the CO2 builds. As most of you know, my dad has severe COPD and has been on ventilator/life support for several months and really hasn't been well. He is terminal, on a no-code, and getting comfort measures only. The last 2-3 weeks have been a roller coaster ride with up and down oxygen levels. They would set him on 100% oxygen (10 liters), his sats would go up to about 96%, then they would turn him down to 8 liters, and within 24 hours his sats would drop to mid to low 80s, he would be uncomfortable with respiratory distress and they would turn him back up to 10 and give him a morphine shot. Whoever the RT was that would turn him up would go home and the next RT shift would have to fight the low sats. It's really been a roller coaster ride. Last week I finally said ENOUGH and told them to just leave him on 10. Two RTs didn't agree with me, and three agreed. Well, when one of them turned him back down to 8 and it started all over again, I sent a letter to the doctor (yeah right - one doctor for 100+ patients and he only goes to the home once a week), the Director of Nursing, and all the staff in his unit and demanded they leave the ventilator set on 10. They complied. His sats held at 90 to 91 for several days, and then Sat. the bottom fell out. His sats dropped and held at 77% with none of the usual steps taken helping to bring it up. He was started on 10 mg. morphine every 6 hours, and his sats have held in the 81% to 84% range, only dipping into the high 70s when the morphine starts to wear off. Those are the facts. Here is what I'm dealing with. He is not comatose and he is not unconscious, but he is very close to both. He will open his eyes briefly, but just kind of stares without expression. Today, I did manage to get him to open his eyes, and I gave him a kiss and he kissed me back. However, he kept kissing even when my face wasn't there anymore. I would not say he is in a vegetative state, however, his quality of life is nada. They gave our dad a 50/50 chance of getting better if he agreed to go on the ventilator. He did get better with some of the other problems he had, but his lungs have gotten worse. My brother and I promised him that if he got real bad, we would withdraw the life support. I do have the living will and paperwork necessary to do that. What the doctors didn't tell us was that although he could voluntarily go on the life support, the Catholic hospital where he was and now the nursing home where he lives, will not withdraw life support. First of all, I don't even know if this is something I should consider yet or if I should just wait a few days and see what happens. If he slips into a coma, or if I decide to withdraw the life support, I have to get the nursing home doctor to agree, and he has to find a doctor that works at a county hospital to admit him to hospice. Of course, all of that involves transport, trauma, expense and Medicare. Here's the thing. If I don't withdraw life support, I feel like he is now set on "slow kill". Rather than the ventilator helping him, it is killing him because it is causing a building of carbon dioxide in his body. To make it even slower, the RT tonight told me that since he is no longer making any effort (the machine is doing it all - 100% oxygen and 16 breaths a minute), the machine will do an even BETTER job of blowing off some of the carbon dioxide. In other words, slowing down the whole process of natural death. I know this is a heavy-weighted post and difficult to approach. My feelings will not be hurt if not even one of you replies, but I feel better just getting all my thoughts on paper. I am also hoping that maybe one of the nurses or a doctor could tell me what to expect at this stage with the CO2 situation. I'm going to send this link to my brother to follow your comments as well. We are the oldest and will be the ones to influence our younger sisters on our decision. Any help anyone can give is more than appreciated. I apologize that I haven't responded to a few PMs or answered any threads the past couple of days, but I've been spending most of my time with my dad. I did catch up on reading everything tonight, though, so I will get some responses to all of you as soon as I can. Much love and thanks to everyone, Peggy Quote Link to comment Share on other sites More sharing options...
betplace Posted June 22, 2004 Share Posted June 22, 2004 (((Peggy))) Oh my dear! I am so sorry this decision has to be made by you and your brother! Talk about being between a rock and a hard place. I have no advice to give except to follow your heart so that you will be at peace knowing whatever decision you make is made out of love. Hugs and prayers going out for you and your family. Blessings Betty Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 22, 2004 Author Share Posted June 22, 2004 Good morning. Thank you, Betty, for your sweet note. Some of you will just be getting up and reading this post and I have some more thoughts on this now. I called to check on my dad this morning. He's about the same, but his blood pressure is a little better. His O2 is 84% and they can't get him to open his eyes. I think I'm leaning toward going ahead and calling the doctor today to try to get a transfer arranged but to schedule it for Friday if he's still like he is now. Since the machine says he is making no effort on his own, and if that is still the case by Friday, it will have been one week. By that time, if he still isn't responding to us, I feel he won't have any muscle strength remaining to even try to breathe on his own even if his vital signs get better. His quality of life right now is zero. I just can't stand seeing him like this anymore. I'm going to send an email to all my family and see if we can get 100% agreement for Friday. The final decision falls to me, but it will make me feel better if I have my brother and sisters' support. I know I already have my dad's sister's support. Thank you all for taking the time to read this. Love, Peggy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 22, 2004 Author Share Posted June 22, 2004 By the way, I just read my first post, and I guess I forgot to tell you his blood pressure. It's been 68/23, 78/50, etc., but this morning it was 119/50. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 22, 2004 Share Posted June 22, 2004 Peggy,Hi and good morning.I don't know how to answer your post.I try to put me in your boots but stikk can't answer.Guess I have to go w/nushka &say go w/what your heart says.Sorry you have so much on your shoulders rite now.Hang in there & watch for a sign from God. Quote Link to comment Share on other sites More sharing options...
john Posted June 22, 2004 Share Posted June 22, 2004 Peggy, I do not really know. I tried to find a few links for you. I am praying for your family. The morphine I think can cause problems with his respiration, but obviously it is needed. http://papapoo.com/oxygen.htm http://yarchive.net/med/co2_poisoning.html It sounds like you want to make sure he is comfortable. When my mom was in ICU, most of the nurses advised against any drastic means to keep her alive. They said the intubation/ventilation is not pleasant. Take care John Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 22, 2004 Author Share Posted June 22, 2004 Thank you, my friends. You are the BEST. Dad is worse this morning and the decision has been made. The following letter below was faxed about 15 minutes ago: Dear Dr. ******: In light of our dad’s current condition, my family and I have decided we want to exercise his wishes under his Living Will and have the ventilator life support gradually withdrawn. We understand that the ventilator could keep him in his current condition for quite a long time, thus prolonging the natural process of death. He is incoherent and unable to communicate with us at this time. After a conversation with Hospice at Witham Hospital in Lebanon, I understand that you would have to approve this and contact a doctor that works out of that hospital in order to have our dad transferred. Will you approve this? If yes, do you know a doctor that you can contact in Boone County that works out of Witham Hospital? If not, my dad’s sister, **********, who lives in Lebanon, will contact her doctor and see if he will take care of this. If something cannot be worked out with Witham, is there a hospice facility in Montgomery County that you can contact? Please let me know immediately. We would like to get him transferred today or tomorrow. My cell phone number is *********. Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 22, 2004 Share Posted June 22, 2004 In my mind, I put myself in your father's place. I think the decision to move him is wise. Cat Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 23, 2004 Share Posted June 23, 2004 Peggy, I am so sorry for all your troubles right now. I pray you all have the strength to see this thing through. It sounds as though your dad is not in pain, at least, that's a good thing. XOXOXOXOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Guest HerSon Posted June 23, 2004 Share Posted June 23, 2004 My mom went into respiratory arrest and was put on a ventilator in the ICU. In her case, all the doctors did daily was bother me to discontinue life support! They basically said that since she already had lung cancer it was gonna get her anyway, and that the ICU was costing Medicare insurance a fortune every day. They also said that even if she survived, I'd have to pay thousands of dollars a week just to keep her in a special nursing home with ventilator support! I knew if I had disconnected her I would not have been able to live with myself thinking that she may have had some chance of surviving if God might answer my prayers. Eventually she had multiple organ failure and passed on, but at least I know that I gave her ever chance I could to live even a little bit longer. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 23, 2004 Share Posted June 23, 2004 I think you are doing the loving thing at the right time, now that he is no longer responding. Blessings and condolences to you and your family. Margaret in Iowa Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 23, 2004 Share Posted June 23, 2004 Oh dear Peggy, Just loving and supportive thoughts for you and your family. Quote Link to comment Share on other sites More sharing options...
Elaine Posted June 23, 2004 Share Posted June 23, 2004 Peggy I am so sorry I wasn't able to see this until now. I couldn't get on the boards. I hope that you feel better now that at least you all have made the decision. I hope that takes away some of the anxiety. Praying for you, all. elaine Quote Link to comment Share on other sites More sharing options...
Addie Posted June 23, 2004 Share Posted June 23, 2004 I too, am just finding this Peggy. I have yet to be in your position with this sort of situation...so have no experience or advice to offer you.....simply my prayers, best wishes and sorrow that such a decision has to be made. I will be thinking of you....and FWIW, I am well assured that you are doing the very best for and by your father and his wishes. To face such a tough decision motivated by love and respect.....we can do no better than that. I will be keeping you in my special thoughts over the coming days... Quote Link to comment Share on other sites More sharing options...
Andrea Posted June 23, 2004 Share Posted June 23, 2004 Peggy, It sounds like you are diong the right thing. My goodness your plate is full! How is your husband doing? Sending love your way Quote Link to comment Share on other sites More sharing options...
teresag Posted June 23, 2004 Share Posted June 23, 2004 Peggy, I know I'm late in responding, but I hope I can inform you and help a little. First, I am outraged that the facility thinks it has the right to impose Catholic values (strictly interpreted; I'm Catholic and I don't agree w/ them) on you and your father. The law upholds living wills; you should not have to pay the expense of transferring him elsewhere. The facility should transfer him at their expense or follow the stipulations of the living will. They are obligated by federal law to inquire about living wills upon admission; I believe they are also obligated to follow them in every state. Talk to an attorney if necessary. Request an ethics committee consultation; every hospital has one. As far as carbon dioxide, what happens is appropriately called "CO2 narcosis" because its effects are like those of a narcotic. The person gets sleepy, lethargic, and eventually loses consciousness. It sounds as if this is what is already happening w/ him. Fortunately, he is probably quite comfortable. Carbon dioxide, like many other substances circulating in the blood of someone who is very very ill, is a powerful substance with many effects. In short, eventually all systems will shut down; often, the brain & kidneys fail first, followed by liver & heart and then death. With morphine and a high CO2, he should remain quite comfortable. If he appears restless, more morphine is needed. Other drugs may be helpful with restlessness, like Ativan, for example. Finally, you mentioned that his quality of life is zero now that he is comatose. I always ask myself if my own father's lingering after his diagnosis, despite his pain and terrible shortness of breath, was not a blessing. I wonder if maybe it served as a lesson for his family in caring, in love, in preparing to go on without him. I treasure the opportunities I had to care for my father as he was dying. There was a sense of intimacy and love that I'd never experienced with him before. Even though your father appears not to notice, I'm betting that he knows when you are there, and is comforted by your presence. He cannot respond now, but that doesn't mean he doesn't notice; it doesn't mean he doesn't feel your love. Take care. If you want to pm me for more information, please feel free. You are doing the best job for your father! - Teresa Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 24, 2004 Share Posted June 24, 2004 Peggy, I'm sorry I'm late in getting here.... I have to admit, I'm at a loss for words (it happens sometimes...). I don't know what I would do in your shoes, and I'm gonna be wise enough to admit that right off. I can understand the fence you are straddling, not knowing EXACTLY what your father can and cannot hear/feel/understand and wondering if you are doing the right thing by honoring his wishes AND a promise you made to him in what seems to be a distant past... I do NOT envy you your current position. I believe that by following your heart, you will make the best decision for you (the family) and him with the knowledge you have and the requests he has made. I'm sure that in this in between time, he is "talking" to those he knows on the other side and they are making preparations to take him Home. May his journey be an easy one... Peggy, my dear friend, may these gray clouds start having those silver linings and may you start to feel the warmth of the sun again soon. Please take care of yourself through all of this emotional trauma, call me if you need to talk. My parents live in the "country", but have been upgraded to a Campbell's soup can instead of a generic can on a string... Love, Becky Quote Link to comment Share on other sites More sharing options...
amelie Posted June 24, 2004 Share Posted June 24, 2004 Hi Peggy. Three years ago, my dad was in a similar position as yours... He had been in the hospital for several weeks after the Thanksgiving holiday, but was allowed to return home shortly before Christmas. Christmas Day, we called 911 because he was going into cardiac arrest. The emergency team managed to revive him...and while conscious, he was in very poor condition when he arrived at the hospital. His vital signs were extremely erratic and we were told that we had two options: 1. to take extreme measures, which would require some invasive tests to determine the extent of the heart damage or 2. allow him to pass away with comfort measures. Because he had already indicated before that he didn't want "extreme measures," we advised the hospital staff to keep him out of pain. However, after the situation was explained to him, he decided that he wanted them to do everything they could. They intubated him for some cardiac procedure (whose name escapes me)...and, after he was intubated, he stopped breathing on his own. It was difficult to know if he was conscious or not...Some of my sibs claimed he was...others claimed he was not... After several days, the medical staff advised us that, again, we had two options: 1. Attempt to find a surgeon that would try some risky heart operations or 2. Take him off the respirator. While it was an extremely difficult decision, we chose to take him off life support. His quality of life would have been extremely poor had he miraculously recovered from surgery. And, even worse, it was very likely that he would have passed away on the operating table (which horrified me, for reasons I don't even understand). All of my family, my two brothers, my two sisters, and my mom, his wife of nearly fifty years were in the room when he passed away. It was unbearably sad and difficult, but he very quietly and peacefully stopped breathing only a few minutes after the ventilator was removed. I tell you all of this only to let you know that I do not believe you can make a "wrong" decision in an instance like this. If you love your father, (which it sounds like you do, very much), then of course you will act in what you believe is his best interest...in a way that will honor him. And no matter what decision you make, you may later question whether you "did the right" thing; I know that my whole family wondered after my dad's passing. Just know that as long as you are acting in a loving way towards your father, you cannot make a wrong decision. In the end, and thankfully so, we are not the final arbiters of life and death. Know that God is guiding you and your family through these difficult times and circumstances. Quote Link to comment Share on other sites More sharing options...
IIIp0 Posted June 26, 2004 Share Posted June 26, 2004 Peggy, I apologize for not writing sooner -- but I have no doubt in my mind that whatever decision you've made or continue to make will be the very best decision -- and also the RIGHT decision to make because you're acting, you're doing out of love. You cannot go wrong. And no one BUT you has the same vantage point, understands and knows the facts as do you. Trust your heart -- trust God, and know that you carry so many of us with you during this time. My arms are around you now --- I am so so very sorry for this critical position you are faced with..... Big Hugs to you Peggy Keep that courage and faith ~ Beth Quote Link to comment Share on other sites More sharing options...
IIIp0 Posted July 1, 2004 Share Posted July 1, 2004 [[[[[[[[[[Peggy]]]]]]]]]]]]] --- I am so very sorry for having to make this life-altering decision; I have learned from your strength to carry it out, and believe so very strongly that there are no mistakes. You did not make this decision alone - your family and your God was with you. And I believe just as much, that your father knows that too -- which is why you were, where you were. There are no coincidences in my humble opinion. I look forward to the day when you're here again -- you give us all such strength and hope. Big Hugs - Beth Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 1, 2004 Share Posted July 1, 2004 Peggy, my heart goes out to you and your family. The decision had to be with your family, and it sounds like you knew enough about your dad's wishes that you were able to reach a decision. I think you are doing the right thing. Don Quote Link to comment Share on other sites More sharing options...
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