On dying at home....

[catnhatnh]

Just came from a post on hospice care and felt I should share the following...In the late 80's I worked as an EMT in Connecticut...While times have (I hope) become more liberal in terms of at home death,as late as 1989,we were still required to resuscitate ANY viable patient-meaning if it COULD work,you MUST try...So still,if you bring Mom Or Dad home to die, NEVER NEVER NEVER call 911 and hope to have a sympathetic person help in a normal death-that is (or was) prohibited by law and once I walked in it meant the whole nine yards including (once) CPR on a nice 90 year old cancer patient upon whom I broke 10-12 ribs and added the worst 10 days of her life,merely because the family thought they should call 911 because she was having trouble breathing....in fact that happens and she would have been fairly peacefully dead within hours-but a chickenshit family sentenced her to a final (and expensive) round of "lifesaving procedures"...If you take them home to die,then let it happen-"help" won't...Just my take..

[Rainscents]

1. OMG

That is horrible story. :cry: Thanks for the info.

[AlCzervik]

2. my mom died at home, she had in home hospice care and i think they saved

me, i was 17 at the time and they did everything they could to keep her comfortable and me for that matter. She was in hospital until her doctor finally told me the lowdown and she had her choice---she wanted to die at home and although it was literally the worst day in my life i'm glad her wish was granted.

[mzteris]

3. My dad

suffering from Alzheimer's and Parkinsons -and in a downhill slide - had a heart attack at home. My Mom called my brother and he called 911. DUH!!!!!!!!!!!!!!!!!

He sentenced Dad to two more years of indignity and suffering. Not to mention causing Mom more pain and anguish - plus mental/physical deterioration - from having to deal with Dad's issues.

[chookie]

4. Good advice

As someone who was a caregiver in a home hospice situation, I appreciate you sharing this information -- it certainly could save a lot of heart ache in an end of life situation.

[MuseRider]

5. Yup

I have had to do CPR on old people who want to die but nobody had bothered to do a DNR yet. Stinks, hurts them, keeps them around longer than they wish to be around and usually in pain. Also young people who are dying but the families can't let go. You do that because that is the wish of the family but at least you don't end up breaking all their ribs in the process.

Good point, I am glad you brought that up because many people would not know that.

[bush_is_wacko]

6. Thanks for posting this...

I have watched several family members die at home and we always had hospice nurses there with us. There was never even a question for us of calling 911. We just waited until the hospice nurse told us he/she was dying and stood around the bed crying, praying and saying goodbye until those agonal breath sounds seemed to stop for good. I never even considered what would have happened if one of us had called 911.

I fully expect to die at home in my own bed surrounded by my family if at all possible. I will make sure to make my wishes known that 911 is only to be called after my agonal breathing stops.

[kster]

7. We called the Hospice people

in the end, with my mother-in-law, we had 4 to 6 cars in front of our house from the Hospice within minutes. Hospice I can not say enough about that group of people. Their support was phenomenal.

[kestrel91316]

8. When somebody is ready to die, just LET THEM DIE. It really is

a simple concept.

If you don't like watching the process, leave the room or the house. But LET THEM DIE.

(I am referring specifically to a hospice or "going home to die" situation)

[DURHAM D]

12. And remember to tell them goodbye. It is a release for the

patient to go on.

[hedgehog]

9. People need to know what to do when someone is dying

I know of family members who called the ambulance to pronounce the person dead even though it was after a long siege of Alzheimer's. They didn't know what else to do.

[fed-up]

10. I was my mother's primary caregive after her major stroke in 1996, then a

diagnosis of lung cancer Feb 1, 1999. She passed away at home with part of her family on Feb 13, 1999.

We had hospice care through Kaiser and they were very clear that since we had signed the DNR (do not resesitate), that we SHOULD NOT call 911 if she were to need it as they would be required to do whatever it took. They also gave us a sticker to put on the phone.

She passed away peacefully at home surrounded by loved ones, without being hooked up to any machines (she made the choice to not use the oxygen as it was VERY uncomfortable for her). She also was a diabetic and I believe that played a big role in her vitals going downhill rapidly. She finally got to eat what she wanted, little bits of ice cream and ice chips without worrying about stabilizing her blood sugar levels, as at that point she wasn't eating enough to maintain them.

I read a few of Elizabeth Kubla Ross's (sp?) books and also had a small pamphlet from hospice that clearly laid out what the symptoms, stages of dying were. That was the MOST helpful thing for me.

Hospice was there by phone 24 hours a day to answer any and all questions I had. They even changed social workers, no questions asked as for some reason I wasn't comfortable with the first one. The morning she passed away there were no workers available to come to the house, but that was no problem as we all were okay with handling it ourselves. Lots of cooling washclothes and ice chips (while still conscious) seemed to relax her and put her at ease. She was also very accepting that it was her time to go.

[Ilsa]

11. Yeah, I have some relatives whose aged mother was

on her way out with severe health problems and dementia and was dying. She was getting hospice care at home, but whenever she started having problems, her adult kids would call 911. Hospice was mad because they aren't suppose to have anyone in the system that the family is wanting resuscitated.

People need to understand that laws govern what professionals can and must do with regards resuscitation, and it may not go the way you want it to. If it is time to die, please let them go.

[Aristus]

13. My brother-in-law died at home, with all of us gathered around him

I can't think of a better way to go. He was comfortable, safe, and surrounded by his children and loved ones. No medical devices sticking out of his body, no hissing respirator, no hushed activity out in an institutional-green corridor. I think he was happy at the end.

[mantis49]

14. In IL,

you need to complete a DNR order available from the Dept of Public Health. Put it in a protective tube and store in your freezer. If 911 is called, the EMTs or paramedics can find the order easily and will not begin resuscitation if cardiac arrest or respiratory arrest has occurred.

To repeat what someone else said, if arrest has occurred, don't call 911. Call the coroner.

I'm a nurse, formerly in long term care and now with hospice.

[KyuzoGator]

15. My CPR class was taught by an EMT...

His exact words were, "You'll probably hear ribs breaking, especially if the person is elderly. Broken ribs heal, but dead doesn't."

[Warpy]

16. Great advice!!!

Hospice is valuable in that they tell you to CALL THEM FIRST when something happens. Yes, EMTs are required to resuscitate a patient. They can't just offer transport in most areas, although some ambulance companies DO offer transport, only. It's always a BAD idea to put a terminal person into the hospital unless it's for pain control, then it's really best to get them home with whatever equipment it takes, usually a PCA pump and bag of morphine.

I don't blame families for panicking when the end comes. Most people haven't seen death, it's the final taboo, and they think when Granny starts grunting during agonal breathing she's in some kind of distress. She's not.

That's why it's really essential to get hospice involved when someone wants to die at home. A lot of what they do is educate families on what to expect when the time comes, as well as making sure the dying person is as comfortable as possible.

[Cleita]

17. Although my dad died in the hospital, the same happened to

him. He kept having heart attacks and they kept bringing him back. They kept him alive an extra eight days. By the time he died he had broken ribs and bruises all over him from the heart pounding. I vowed then that no one would ever die like that who was in my care.

I think hospice is a very necessary institution in our so-called advanced civilization.

[NNN0LHI]

18. And keep the DNR (where appropriate) in a tube in the refrigerator

That way everyone will know where its at when needed.

Don

[catnhatnh]

19. On being young and dying...

my brother lost two boys to a form of muscular dystrophy...the oldest lived long enough to make his high school prom,but not his graduation ceremony...the night he died,he told my brother he was tired and wanted to go....My brother told him it was ok and that he and his mom would be ok...we buried him in his prom tuxedo...but the point,like this post is about the dignity of a proper death-my brother did it well-I hope to be as graceful...

[Beausoir]

22. I'm so sorry.

Your post really touched me.

[catnhatnh]

27. It is life..

...and properly so..I much appreciate your sympathy.It was a while ago and we heal.I just hope to show such character....Thanks

[Mz Pip]

20. My story

My mom lived with us for 7 years. She was in good shape but had high blood pressure. One day my son was looking for some rubber bands and I told him to ask Grandma since she saved everything. A minute later he ran up the stairs from her room saying there was something wrong. I ran downstairs and she was laying on the bed. I was pretty sure she was dead but called 911. They came and did CPR for a while.

Then the paramedic came upstairs and told me that protocol required that they transport her to a hospital to continue treatment but she didn't think it would really make a difference. She told me that she would call the coroner and request suspension of treatment and that we not take her to the hospital and that the family agreed. And I agreed. There was no point in prolonging the inevitable. It was the right thing to do.

Unfortunately, because we never did take her to the hospital we had to pay for the 911 call. Even though she was dead.

I wouldn't be too hard on the family though. When something bad happens it's almost second nature to call 911. A lot of people don't know that a 911 mandates the whole CPR thing. People just don't know how to react.

I am grateful that the paramedics were willing to call it quits rather than prolong treatment that wouldn't have worked anyway. It made it easier for all of us and it was what my mom would have wanted, even though she had no living will.

Mz Pip
:dem:

[agates]

21. Also

The best advice is to not call EMS, however it sometimes happens. Check to see if your state has a process for EMS or out of hospital DNRs. Some states use a program called Comfort One. It utilizes an easily recognized bracelet, identifiable by EMTs/paramedics so that they won't initiate resuscitation. You may need to have your physician sign specific forms, but it is worthwhile. An EMS DNR will work in the home, in hospice, in assisted living or long-term care, and also should follow the patient to the hospital until hospital orders are written by the physician.

Wrongful resuscitation of the terminally ill is a tragedy.

On a related note, check out this local story about the school district refusing to honor a student's DNR order...

http://www.argusleader.com/apps/pbcs.dll/article?AID=/20060321/NEWS/603210315/1001

[Flying Dream Blues]

23. There's a wonderful synchronicity in these threads for me tonight.

As I said in the other thread, my 74 yr. old mom went home on hospice care today after 7 weeks in the hospital. Something about opening my computer and seeing these threads tonight was extremely comforting and validating. This was a very hard decision for us, since her condition (and prognosis) is really hard to know. Thanks to all my DU friends...this is a wonderful community and I'm much more invested than it would appear by how often I post.

:hug: :hi:

[progressivebydesign]

25. That is a very sweet, thoughtful post.

I can tell you're a very good person, by your post. I wish you and your mom well. :grouphug:

[Flying Dream Blues]

26. Thank you, progressivebydesign. I meant it, and I can tell

you're a very good person, too.
:hug:

[catnhatnh]

28. God Bless

If I were into IM nonsense I would...but between you and I feel both blessed and cursed to have two living parents,one of whom will be 78 in just a few minutes and one of whom will be 80 next month...I live day-to-day praying in each for their continued independence...Dad is spacey and can no longer drive....5 years ago he could still FLY....Mom has taken over,butb her next illness may bring the whole thing down...and still I can't figure out what mercy might be...We will all survive it,but it IS hard...

[EFerrari]

24. We did that. My grandmother had a stroke, her 45th, she'd

been vegetative for 9 nine years. We weren't allowed to have oxygen at home, so we called 911 because her breathing was labored.

So, the EMTS came and two trucks and a squad car. The EMTs said, "She doesn't need oxygen, she's still breathing" and refused to give her oxygen. That was stupid.

Then, they wanted to transport her, so my mom kicked them all out of the house.

At that point, another squad car was called in, and I swear the Sunnyvale Police tried to kidnap my grandmother.

Mom and I wedged ourselves in the door and wouldn't let anyone in and just stood our ground but it was very scary because they all had weapons and all we had was adrenaline.

Finally, a sergeant showed up. Mom wouldn't let him in either. He borrowed the phone next door and I guess some even higher up said, "Get out of there before those crazy women hurt you" because they all went away, all fourteen of them.

We never called 911 again for anything.

It's funny now, but at the time, someone could have gotten hurt or they somehow could have forced us to give them my Mami and that would have been terrible for her.

She died at home very quietly about two years later.

[catnhatnh]

29. Okay,once more

Volunteer or paid (and I've been both) once you have been called to an address you are legally required to do everything in your power to "save the life" of the person on the call sheet...if they are determined to die in the next 20 minutes,20 hours, or 20 days makes no difference, just while I am there they CANNOT be allowed to do so...a nice fiction,promoted by EMT's and hospitals is that no one "dies" enroute,and this is true to the point that their lifeless body will be oxygenated and perfused until someone with a title stops the charade...in point for most dead folk I could have told you in your living room...I have saved several lives...I was there with an ambulance,a crew, and equipment to do so...it was very fufilling...But Granny on the floor was the unspoken downside...

[EFerrari]

31. Oh, I understand. And that crew at our house that day

were probably doing everything they were supposed to do to a T.

There were some very funny parts, like when the PD told my mom to prove her mother was her mother.

lol

[catnhatnh]

32. What else could they have done???

...having run a crew,I have seen this X 100...and to this day I have no answer...how much easier it would be to have my crew walk in and say "No-that's it-we're about done..." and then watch something inevitable...but I am neither God nor a Doctor,both of whom might descibe different trajectories for the patient if consulted...I pray only that I never missed a viable (real) save in the fog of deaths...

[EFerrari]

33. It's a difficult negotiation. And since the PD nor the doctor

were God, we took responsibility for the choice we made that day. It was the right one.

And, it could have just as easily been wrong. I really do get it.

[catnhatnh]

34. I doubt you were wrong...

...I just wish this entire thing on no one...it is easy to seem clever after the fact and if that is how I seem I am sorry and apologize.

[EFerrari]

35. No, not at all. It's no small thing to take on that much responsibility

when everyone else seems to be avoiding it.

:)

[cynatnite]

30. That's an example of non-preparation for death at home...

When someone is going to die at home preparations need to be made ahead of time. Everyone should know how things will proceed once the loved one has passed on. A funeral home needs to be consulted with, DNR requests and talking with the physician is a must. These are just a few of the arrangements.

My aunt died at home and the family made much of the arrangements ahead of time so unfortunate situations like that does not arise. It was a very peaceful and loving that we all shared together as a family.

Unfortunate consequences such as what you described can be avoided.