I’ll point out that many folks don’t realize hospice isn’t a place; it’s a process. While it can be done in a care-home type setting, it can also be done at the patient’s existing home.
It’s about admitting (=recognizing) that applying further modern medical efforts towards curative or staving-off-the-inevitable is pointless and instead the best (=least bad) way forward is love, food, water, and pain meds until nature finishes its job of recycling another human being.
There is a tough spot that the OP’s step-aunt is in. Namely having a lot of the off-nominal conditions of great old age, but no single rapidly advancing disease process. So they end up frail and semi-helpless, but able to persist, and indeed enjoy a simplified life, for a time of years or even decades. Hospice is not set up for that.
It’s similar to what happened with my grandmother. My mother had to go often to check on her. She was an hour away at best. She was sure she would find her dead one day. One day she wouldn’t answer the door and a neighbor had to break in. My grandmother was unconscious but alive. She was taken to the hospital then we put her in an inpatient hospice. She got better and graduated from hospice but had to stay in a nursing home since she needed around the clock care. She was 96 at the time. She died when she was 104.
My mom had this. It said that my sister or I could make decisions on her behalf with the caveat that she did not want X Y or Z. I think it said we could have her admitted to the hospital but not to have her zapped if her heart stopped and no CPR if she stopped breathing. There was more to it than that but that’s what I remember off the top of my head.
This thread has had lots of varying advice that I cannot add much to ( calling 911, DNR’s etc.)
But I would like to offer the OP one specific action to take, which has not yet been mentioned: buy a mirror.
When I was involved with a similar situation, the home-care nurse gave me the specific advice I mentioned: keep a small mirror handy, (like the kind women used to keep in their purses to check their lipstick.)
When the person seems to have died, do NOT call any authorities right away. You don’t want to create problems. An obviously dead body is one thing…but a not-so-obviously dead patient is treated differently. There may be legal regulations which require the medical crew to take invasive actions which you don’t want.*
Instead, use the mirror, to verify death…
Hold it over the patient’s nose and mouth for a full minute, to see that there is no fogging. Then wait another 15minutes, or better, a half hour. Then hold the mirror again, and make sure there is zero sign of breathing.
Then, only when you are sure of the death, call the authorities.
–
.* (In my jurisdiction, for example, once an EMT begins to administer CPR, he is legally required to continue for 20 minutes. Also, the law requires that any death which occurs outside of medical supervision must be investigated by the police. The policemen in our house were polite and sympathetic…but firmly professional. They treated the house as a potential crime scene for 20 minutes, It was a bit stressful.
My mother was in home hospice care when she died. It was my sister’s turn to be with her, and i was trying to sleep when she actually died, so i wasn’t there. But i think the hospice nurse decided she was dead, perhaps talking on the phone to a doctor. No doctor came to the house. My mother’s regular doctor, not the hospice doctor, filled out the death certificate.
My sister called the rest of the siblings, and we all gathered there. The nurse and my mother’s aid washed the body and dressed her in a clean nightgown. And then we called the funeral home. Actually, it might have been one of the funeral workers who legally declared her dead, as i think the death was recorded the day after it happened, as midnight had passed.
Anyway, we had no 911 call, no police, no doctors, no attempts to resuscitate. We all said goodbye. Her last days were horrible, but the actual death wasn’t, it was peaceful.
Check the rules on your jurisdiction, and don’t call 911 if you don’t need to. That’d be my advice.
I’ve had the DNR talk with my docs. Its not a pleasant talk. Believe me.
I will most definitely die at home. (Unless Ivys driving kills me first).
My choices: no heroics please. And please please don’t “sit” with my dead body. I find that intrusive. Don’t light candles. Don’t call extended family in. Remove my pets from the room.
And if you call a religious person in and have “prayer” I promise you, you will be haunted all the days of your life.
Other than that, I’m easy.
Funeral is planned. Money is paid.
We’re “of an age”. People, plan ahead. Have the talk with family and medical persons. Get your ducks in a row, now. While you’re thinking clearly.
In bad taste, I know, but it reminds me of this joke.
Two hunters are out in the woods when one collapses…
He doesn’t seem to be breathing and his eyes are glazed. The other guy whips out his phone and calls the emergency services. He gasps, “I think my friend is dead! What can I do?” The operator says “Calm down. I can help. First, let’s make sure he’s dead.” There is a silence, then a gun shot is heard. Back on the phone, the guy says “OK, now what?”
In my humble opinion, your wishes should absolutely be respected for that first choice. But none of the others will affect you, you will be dead and gone. And the people who love you should do whatever they damn well please, whether that’s lighting candles or having the body whisked away. Funeral rites, including the immediate treatment of the body, are for the living.
(Although it’s helpful to your loved ones to know what you would like. The four of us were sitting with the body and someone said, “what should we do about the body”, and i said, “mom told me she wanted to be cremated and have her ashes scattered where we scattered Dad’s ashes”. And that was the end of the discussion. The others all said, “okay, let’s do that”, and we called the funeral home and started to make arrangements.)
