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Nightingale

Please talk to your families!

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Hi, everyone!

this is just a reminder to have a good chat with your families about your wishes in a medical emergency. It's not intended as legal advice (please talk to an attorney in your state about that, as the below is just generalizations, and the below documents do not apply in all states, though they can be used as guidelines for your family regardless), just a collection of what I've learned personally from going through it with my family.

My grandfather passed away about two months ago, and because my family members didn't know the right terminology for some things, there was a lot of confusion in the hospital a few weeks before his death, and I wanted to share it to hopefully spare some other folks similar issues.

For example, my dad and my aunt didn't know the difference between an "Advance Directive", a "Medical Power of Attorney" and a "DNR, or Do Not Resuscitate Order". You can imagine the confusion and problems this caused.

An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions (if you are in a coma, for example). If you are admitted to the hospital, the hospital staff will probably talk to you about advance directives, but that's not the time to think about them. You should think about them beforehand, when it's not an emergency or high stress situation, and you can talk about things with your family, and an attorney if necessary. Everyone should have one of these, because it lets your family and your doctors know whether you want extraordinary measures, and if so, what kind. Your family won't be left wondering what you'd want if you can't speak for yourself, and accidents can happen suddenly. It's perfectly okay to tell them to do everything they can, and it's okay to tell them to do nothing. It's just not okay to tell them nothing, because they'll always be left wondering if they followed your wishes.

A good advance directive describes the kind of treatment you would want depending on how sick you are. For example, the directives would describe what kind of care you want if you have an illness that you are unlikely to recover from, or if you are permanently unconscious. Advance directives usually tell your doctor that you don't want certain kinds of treatment. However, they can also say that you want a certain treatment no matter how ill you are, like pain medication, feeding and hydration, etc.

Advance directives can take many forms. Laws about advance directives are different in each state. You should be aware of the laws in your state. Many hospitals have forms for advance directives at their front desks and will provide them to anyone who walks in (the main desk, NOT the ER). These forms will help you discuss things with your family and ask questions to help you think about what you would want in various situations.


A Medical Power of Attorney/Durable Power of Attorney lets someone else make health care decisions for you. A durable power of attorney (DPA) for health care is another kind of advance directive. A DPA states whom you have chosen to make health care decisions for you. It becomes active any time you are unconscious or unable to make medical decisions, or it can be active at any time, depending on what you've chosen. A DPA may not be a good choice if you don't have another person you trust to make these decisions for you. Some doctors are hesitant to declare someone mentally not competent (in the case of Alzheimer's or something) while they can still communicate, so that's something to be aware of and discuss with your attorney if you are facing a mental illness. These forms are not permanent and you can revoke or change the people you've selected at any time. For example, my parents are my medical POA, but if I'm in a long term relationship or have adult children years down the road, I'll probably change that.

(as an aside, there's also a regular Power of Attorney that allows for managing finances and the like. Talk to a lawyer about this. It's different than medical POA, and someone who's your medical POA can't act as your power of attorney and manage your financial life. Laws vary by state. My parents are my POA. You should pick someone you trust completely.)

A DNR is just what it sounds like. Do Not Resuscitate. A do not resuscitate (DNR) order is another kind of advance directive. A DNR is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. (Unless given other instructions, hospital staff will try to help all patients whose heart has stopped or who have stopped breathing.) You can use an advance directive form or tell your doctor that you don't want to be resuscitated. In this case, a DNR order is put in your medical chart by your doctor. DNR orders are accepted by doctors and hospitals in all states.

When my grandfather was admitted to the ER with pneumonia and breathing trouble, my aunt told the doctor that my grandfather had a DNR, when what he had was an Advance Directive. It asked that he not be sustained on machines indefinitely. That's very different than a DNR, but the wrong thing ended up in the chart because my aunt didn't understand the terminology. Luckily, because my mom said "they told the doctor about the DNR", I was able to say "Wait a second! Grandpa doesn't have a DNR. He has an advance directive. The paperwork is in the top drawer of dad's desk. Get it and give a copy to the doctor." We were able to get everything straightened out very quickly without anything going wrong. However, if that phone call had come an hour later, my grandfather would've died that night, because he needed some care that a DNR wouldn't have allowed him to have.

So, I guess the point I'm trying to make is:

1. talk to your family about your wishes, write out your advance directive, and make sure the appropriate people have copies.

2. Consider who you want making decisions for you if you can't. Do the paperwork if appropriate.

3. Understand what a DNR is and what it is not, and unless you have the paperwork in your hand and are absolutely certain, never tell a doctor that someone has one.


And really, none of the above is really a substitute for having a good heart to heart with the folks that will make decisions for you. Be honest and let them know what you want. If you're religious, it can help to involve clergy in the discussion. Whenever we were uncertain about what to do for my grandfather, as he was a very devoted member of the Catholic church, we found that the priest who worked as the hospital chaplain was a great help because we knew that Grandpa wouldn't want to go against the church's teachings, so knowing what the church's opinion was on certain medical interventions was a great help.


Some other things I've learned over the last two months (again, not legal advice, talk to your lawyer):

Make sure you have a beneficiary designated on all bank accounts.
If you own real property, look into a living trust, because probate is expensive and a pain in the ass.

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it is also good to have the "drawer of direction" in which all deads, wills, directions, and wishes for the survivors are kept. and discuss the will openly with your family BEFORE you die...if they don't like it, that is their problem, not yours. that way, when the will is read, and executed, there will be no surprises or arguments in a time of grieving.


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Where is Darwin when you need him?

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Lots of good info in only a few posts. This might be some kind of record for Bonfire.
Let me add an experience my relatives had.
My uncle was on his death-bed with an inoperable brain tumor. He had a DNR, as he should have in this case. He stopped breathing, and his kid's called 911. The medics showed up and revived him. The daughter told them there was a DNR, but the medics on the truck said, "We're not doctors. We can't make that decision even if there is a DNR. Next time, wait ten minutes before you call us."
This puts a huge burden on the family, but I guess that's where it belongs.
You don't have to outrun the bear.

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Sometimes the kindest thing one can do is to let their loved one die in peace, preferably with family there.

My brother and I were there when my father died a couple of years ago; he stopped breathing several times before he quit for good.

Sharing the moment of someone's death with them is extremely personal. You have a chance to be a part of the last experience they have in this life (regardless of your belief on other lives). There's nothing wrong with dying peacefully at home, and just laying there dead for awhile while the family talks or does whatever they need to.

Wendy P.
There is nothing more dangerous than breaking a basic safety rule and getting away with it. It removes fear of the consequences and builds false confidence. (tbrown)

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agreed. my wife died in my arms, after a long battle with CF. she, her family, her doctor, and I all had talked about what to do when it was time. no confusion, no doubts, just sadness...and a bit of relief too. :|



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Where is Darwin when you need him?

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+1! My mother and I had this discussion a few years ago. It turns out we had exactly the same desires for ourselves, right down to what we want done with our remains and organ donation. Since Mom's a nurse, and I have some experience with this as well, we're each confident the other will do what we want. However, it was definitely worth having the discussion! Unfortunately, neither of us can read minds. :|

See the upside, and always wear your parachute! -- Christopher Titus

Shut Up & Jump!

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Lots of good info in only a few posts. This might be some kind of record for Bonfire.
Let me add an experience my relatives had.
My uncle was on his death-bed with an inoperable brain tumor. He had a DNR, as he should have in this case. He stopped breathing, and his kid's called 911. The medics showed up and revived him. The daughter told them there was a DNR, but the medics on the truck said, "We're not doctors. We can't make that decision even if there is a DNR. Next time, wait ten minutes before you call us."
This puts a huge burden on the family, but I guess that's where it belongs.




In that case, hospice care would have been very valuable! They really helped out with my grandfather, and the wonderful thing with hospice in California is that the police don't have to get involved in a home death. It was just a quiet phone call to the coroner with no fuss and no investigation, and hospice took care of everything.

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Sometimes the kindest thing one can do is to let their loved one die in peace, preferably with family there.

My brother and I were there when my father died a couple of years ago; he stopped breathing several times before he quit for good.

Sharing the moment of someone's death with them is extremely personal. You have a chance to be a part of the last experience they have in this life (regardless of your belief on other lives). There's nothing wrong with dying peacefully at home, and just laying there dead for awhile while the family talks or does whatever they need to.

Wendy P.



This is so true. My grandfather's home hospice nurse was very good at making sure that it was as positive an experience as it could be for all of us, including grandpa. My grandfather's comment about it was "this is all part of life. Just not a good part." I really do have some good memories of my grandpa during that time, and I learned the most awesome stories about him and my grandmother from the folks who came by to visit.

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Kris, this is a great post......

As you know, Doc and I live this everyday and it is one of the toughest things that we go through with the families. It tears us up too - your dealing with family in crisis and if people don't have things written down our hands are tied. [:/][:/]

Not only that but it allows the family to know what should be done and what is wanted - in the end that is important so you don't have kids or siblings trying to sort things out in time of crisis.

DPH # 2
"I am not sure what you are suppose to do with that, but I don't think it is suppose to flop around like that." ~Skootz~
I have a strong regard for the rules.......doc!

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Lots of good info in only a few posts. This might be some kind of record for Bonfire.
Let me add an experience my relatives had.
My uncle was on his death-bed with an inoperable brain tumor. He had a DNR, as he should have in this case. He stopped breathing, and his kid's called 911. The medics showed up and revived him. The daughter told them there was a DNR, but the medics on the truck said, "We're not doctors. We can't make that decision even if there is a DNR. Next time, wait ten minutes before you call us."
This puts a huge burden on the family, but I guess that's where it belongs.



Had the exact same experience with my mom. My idiot brother (RIP) called 911 even though she had a DNR in place because she was 93 years old and in constant, agonizing pain. When the ambulance got there she was not breathing and unresponsive. The crew eventually revived her on the way to the hospital and for the remainder of her life, all five agonizing months of it, mild mannered, church going mom damned those EMT's to Hell on an hourly basis for going against her wishes. >:(:(
The older I get the less I care who I piss off.

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I know that has to be tough. But you also have to think of it from the EMT's point of view. I used to be an EMT and ran into this situation once or twice myself. If we do not physically see a copy of the DNR then we must continue with our duties to revive the person if at all possible. For all we know it's a jilted spouse or child just saying there is a DNR to get rid of the person (in no what whatsoever implying that was the case in any of these scenarios). So as a friendly suggestion, keep a legal, notarized copy of the DNR in the house and let family members know where it is just in case.

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My brother showed it to them but he was not the most sane person in situations like that (you just had to be there :S) at that point. It was just one of those gray areas where the EMTs, under the circumstances I guess, felt they just had to cover their own asses. I guess I kind of understand but the legally executed document was presented to them.[:/]

The older I get the less I care who I piss off.

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Great info. We just started going over EVERYTHING 2 months ago. Its a real relief for me to have a plan but, still working on a better life ins. package.
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I chose to be: "GRANT-A-CLAUS". and work 365 days a Year.
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Had the exact same experience with my mom. My idiot brother (RIP) called 911 even though she had a DNR in place because she was 93 years old and in constant, agonizing pain. When the ambulance got there she was not breathing and unresponsive. The crew eventually revived her on the way to the hospital and for the remainder of her life, all five agonizing months of it, mild mannered, church going mom damned those EMT's to Hell on an hourly basis for going against her wishes. >:(:(




Anyone who is in that kind of situation, particularly when dealing with pain, please make sure you check out what hospice can do. They were wonderful with helping with my grandfather's pain management, and their nurses were just a phone call away if we had questions, and ten minutes any time we felt we needed them, even if it was just that we were stressed and upset and needed support. I don't know how my dad and my aunt would've managed without the awesome support of the hospice nurses.

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