Post by bohemianmango on Aug 29, 2014 16:03:50 GMT -5
I don't think my family would find this post but I deleted the original post.
Thanks everyone again. It really helped getting other perspectives especially from those who were in similar situations. I also spoke to my SIL and BIL. They're both doctors and one specializes in palliative care. You all helped me plan how to approach my family. Hopefully, my grandpa and I will be able to get more support so he is comfortable and at peace.
The right thing to do is to honor his wishes. He is of sound mind. I know how hard it is for you and your family but he has been clear about what he wants.
I'm sorry but what your aunt pulled was wrong. His wishes are his wishes and should be honored. These will be some rough days ahead. You and your family will be in my thoughts.
Have you been going to the hospital? Have you been talking with the doctors? I've honestly never personally dealt with a patient as documented as DNR in their charts and then a family member able to change it, especially if the patient is fully cognizant of what is going on. That sounds unethical. I would probably talk to the attending to find out what exactly happened and go from there.
I've dealt with patients and families taking days to decide on hospice and withdrawing certain care and usually over time the family realizes that helping the patient to be comfortable is the best thing to do because the condition is terminal. We usually give the family time to come to this conclusion on their own. It sounds like you're family hasn't come to the realization of what is going on. I wish you peace and peace for your grandpa.
Post by brandienee on Aug 29, 2014 16:17:35 GMT -5
I am so sorry for your situation. Please respect your grandfathers wishes. I know you all want to keep him, but also think how this condition isn't going to go away. What kind of life is he going to have? Respect his wishes.
Have you been going to the hospital? Have you been talking with the doctors? I've honestly never personally dealt with a patient as documented as DNR in their charts and then a family member able to change it, especially if the patient is fully cognizant of what is going on. That sounds unethical. I would probably talk to the attending to find out what exactly happened and go from there.
I've dealt with patients and families taking days to decide on hospice and withdrawing certain care and usually over time the family realizes that helping the patient to be comfortable is the best thing to do because the condition is terminal. We usually give the family time to come to this conclusion on their own. It sounds like you're family hasn't come to the realization of what is going on. I wish you peace and peace for your grandpa.
I have a feeling he isn't able to make decisions for himself since he's gone into respiratory arrest twice.
OP- speak up. Sometimes it takes one person in the family meeting to snap everyone out of their "save his life" fog. If this isn't how he wanted to live, and he's expressed that, then maybe everyone needs a little reminder. I'm so sorry you're going through this. Letting go and saying goodbye is really hard. Your family is in my thoughts.
When you are sick the only control you have left is being able to die how you want. That's why he has the DNR. The one and only comfort I had when my Grandfather died was that he choose to go. It's hard, it's sad and hell I'm still depressed and cry randomly and it's been a few months. Someone needs to honor his wishes and let him go, this is so unfair to him.
And yes, even when my 95 year old, Alzheimer's grandmother got admitted to the hospital from the nursing home with a DNR, my dad refused to sign a new one (the hospital wanted an updated signature, not just the one transferred from the nursing home) - my dad refused and ran out of the room. When I ran after him, he looked at me shocked and said "Well, I still want them to treat her!". Right, like this woman, who believes in God and the communion of saints needs to be treated with a crash cart and trach tube.
It is pretty rare that doctors will agree to override a dnr that the patient signed while alert and oriented. And I don't know what the "two days" business is about... are you hearing this firsthand, or from family? I might go in and speak with a charge nurse or even the doctor, clear up the situation. I'm sure your family is scared and wants him to be treated, but someone has to stick up for what your grandpa wanted. I'm so sorry you're going through this
Post by bohemianmango on Aug 29, 2014 16:26:30 GMT -5
Thanks everyone. In my mind, I know you're right but my heart pulls in both directions. I'm not exactly sure how my aunt changed it but my mom said she's executor to his trust and managed to do so. I'm still not clear if that gave her that right.
I'm going to the hospital in a bit so I'll better idea of what's going on. As hard as it is, I will try to be his advocate.
I remember being horrified that there was a dnr on my grandpa's charts. But after I realized how fragile he was, I knew it was the right decision. He passed away in peace without a full on struggle to extend a life that wouldn't be much of a life anyway.
It's tough to hear about these things, but let your family know your views and how you feel about both choices.
I'm sorry. It's really hard to let go, even when that's their wish. I believe the laws on DNR's vary by state. We went through something similar with my grandma. She had a DNR in place, but here in KS any blood relative (even myself as a grandchild) could over-ride it. My aunt came very close to doing so, but we as a family sat down with her and asked her to respect grandma's wishes.
I would ask the doctor to explain to your family in detail what will happen when they do need to resuscitate. Perhaps an accurate picture of what that entails (broken ribs, etc) will help hem respect his wishes. It isn't pretty.
This is not the time to be selfish. Or if you want to be selfish, think of how terrible you will feel if he is resuscitated and then lives for the next few days/weeks in terrible pain and suffers as a result.
Take this time you do have to tell him how much you love him and recall your favorite memories and say everything you've always wanted to tell him. Tell him you'll miss laughing with him. But don't make him stay for you, that's a really unfair thing to ask someone you love this much.
Also, I'm very sorry. We're there with my grandma. It's hard.
First I am sorry about your grandfather. I know how difficult this is on you and your family.
This situation is common in CCU settings. If anything, families honoring the patients request is more rare. Just this past week we had a patient on home Hospice who's family wanted to go full care. We intubated him, put him on pressors etc. The MD gets their hands tied because in cases where the patient is unable to determine their own care (which he cannot kow) it then defers to the family. She does not need to be a designated POA.
Thinking of your grandfather,and coming from the other side, keeping him alive in this aituation is selfish. His wishes were to pass. Having COPD is like they are suffication- no medical managment can fix it end-stage. Being on a ventilator is also extremely uncomfortable.
One thing you can do is see if they have a palliative care MD that you can speak to. They have a special way of explains things to pts/families that may be more effective than the Intensivist.
Thanks everyone. In my mind, I know you're right but my heart pulls in both directions. I'm not exactly sure how my aunt changed it but my mom said she's executor to his trust and managed to do so. I'm still not clear if that gave her that right.
I'm going to the hospital in a bit so I'll better idea of what's going on. As hard as it is, I will try to be his advocate.
I'm glad you're able to go to the hospital and can be an advocate for your grandpa.
Generally a patient's wishes should be followed especially if they're documented, regardless of what the family wants.
First I am sorry about your grandfather. I know how difficult this is on you and your family.
This situation is common in CCU settings. If anything, families honoring the patients request is more rare. Just this past week we had a patient on home Hospice who's family wanted to go full care. We intubated him, put him on pressors etc. The MD gets their hands tied because in cases where the patient is unable to determine their own care (which he cannot kow) it then defers to the family. She does not need to be a designated POA.
Thinking of your grandfather,and coming from the other side, keeping him alive in this aituation is selfish. His wishes were to pass. Having COPD is like they are suffication- no medical managment can fix it end-stage. Being on a ventilator is also extremely uncomfortable.
One thing you can do is see if they have a palliative care MD that you can speak to. They have a special way of explains things to pts/families that may be more effective than the Intensivist.
This was very well said.
I'm sorry you feel stuck in this position. But keep in mind that your grandfather is probably aware and feeling like he is suffocating all. the. time. right now. Your family doesn't want that for him. COPD is so scary at the end. I hope your family can find peace in respecting the last decision your grandfather ever got to make for himself.
First I am sorry about your grandfather. I know how difficult this is on you and your family.
This situation is common in CCU settings. If anything, families honoring the patients request is more rare. Just this past week we had a patient on home Hospice who's family wanted to go full care. We intubated him, put him on pressors etc. The MD gets their hands tied because in cases where the patient is unable to determine their own care (which he cannot kow) it then defers to the family. She does not need to be a designated POA.
Thinking of your grandfather,and coming from the other side, keeping him alive in this aituation is selfish. His wishes were to pass. Having COPD is like they are suffication- no medical managment can fix it end-stage. Being on a ventilator is also extremely uncomfortable.
One thing you can do is see if they have a palliative care MD that you can speak to. They have a special way of explains things to pts/families that may be more effective than the Intensivist.
I don't have millions of years of experience, but honestly I've never seen a patient who is mentally competent and comes in with a documented DNR and the family able to reverse it. Actually one of the hospitalists I worked with last week who is also boarded in palliative care mentioned specifically that if the patient said they are DNR, that is what is always followed.
I know it can definitely be tricky if things aren't documented, but the OP said the DNR was documented.
It's a shame that it wasn't followed. Following end of life care is so important.
OP, that's good advice about having a palliative care doctor come to talk to the family. Ask the attending to put in for a consult if they haven't already.
This really hits me, because it's 6 years to the day that my mom went into the hospital with COPD for the last time. Your grandfather's wishes need to be respected. Mom didn't have a DNR, but we knew her wishes and knew we needed to follow through with them. Your grandpa was in a sound place to be able to first sign for the DNR, and it should be left as is. Any further action is just....well, action, but not a cure. I don't have to tell you, you know COPD. The greatest thing anyone can do is to let your grandfather retain his wishes and dignity. I send you so, so many hugs.
(And yes, if your aunt wasn't designated by him as a health care surrogate, I'm not sure how she'd be able to change his docs....I worked as a paralegal for an estate planning attorney for 10 years, and I am only familiar with my state's law, but that doesn't seem right to me)
If I lived through a situation where my family managed to get my DNR overturned, I would be angry and extremely hurt that they put their wishes over my own.
We dealt with this 2 years ago with FIL and my dad this past April. As a PP mentioned, have the doctors realistically spell out his current condition and what is happening. This brought our families a lot if peace to know we were making the right decision.
Oh man this is so tough. Can you talk to him in private? From your comment of your family trying to talk him out of it I'm assuming your grandpa is lucid? If so maybe you need to talk to him and tell him to be direct. I don't know how much or how clearly he may have already expressed his wishes to the family. Unfortunately we all try to dance around with the words at this stage. Instead of "I'm ready to go" or "I'm ready for god to take me" or even "let me rest" he needs to say "I do not want to be resuscitated" or "please let me die". I know this sounds awful but it was something I experienced with my mom. My dad wasn't ready and we were fighting horribly over every decision. I had to talk to my mom and tell her what I said above. It only took one conversation and my dad was on board.