Mom is 81, not in the best shape. No dementia, but CHF, mobility issues. She lives next door to me and functions pretty well day to day. Some of the year, her brother lives with her, too (he's much younger, age 60).
Mom has always said that if she has a stroke or heart attack, she doesn't want to go to the hospital. She want to die at home. But this leaves her brother and me in a conundrum. What if she doesn't die? What if it takes days and days for her to die? Can we legally honor her wishes?
I hate the idea of taking her to the hospital to have her linger and die there (she has a DNI/DNR order in place). This past spring, my aunt (Mom's sister) had a stroke and died in the hospital. Because of COVID, only her 2 kids and spouse were allowed to see her. She died alone when they momentarily left the room.
Would appreciate hearing your thoughts.
Especially burdensome, painful or futile ones.
Think on this.
The ominous sounding Do Not Resuscitate sounds like withholding help, a cruelty. Maybe you picture a group of medical staff watching someone in pain stand around doing nothing?
What I have seen is staff change lanes in a caring way. From the busy *active treatment* to *comfort care*. From frequent observations, blood tests, pokes, prods to the slower pace of letting someone rest, ensuring pain is managed. Family come & goodbyes are said.
Surviving a massive stroke, or a series of strokes to live robbed of movement, speech, continence, ability to eat solid food.. Or being revived from a heart event by CPR that breaks ribs, causes pain, restricted breathing, pneumonia.. I've seen these scenarios.
Life is precious indeed. Trying to hold on at all costs is a valid position too. Many elders seem racked with multiple health issues yet hold on strongly.
What I find most sad is an elder ready to go but offspring keep up all measures to save.
I think an Advance Care Plan is a gift. It can take the burden of deciding some of the awful decisions away from the next of kin.
If Mom dies at home, without Hospice, then you call 911. The Coroner will come out. If Mom has seen a Doctor for her heart in the last 6 months the coroner will probably not order an autopsy. Same if he sees no foul play. He will determine time of death.
If on Hospice, Mom will not be sent to the hospital, she will just be made comfortable. When she passes, the Hospice nurse will determine time of death and call the Funeral Home Mom has picked.
You may want Mom to draw up a paper saying that she requests no hospital if she has a stroke or heart attack and have it notarized. Just so there is no question about why you did not take her to the hospital. If her CHF worsens, you may want to consider hospice.
I imagine there are plenty of older people that have the same request. If she were to linger you could always request hospice. Something similar actually happened to my MIL. She was taken to the hospital where they had a hospice floor. Same thing happened with SO, the hospital had hospice rooms.
You certainly do not just leave her alone. Call 911 and let the health pros provide their expertise.
I empathize with her feelings. Her sister and mother both died in a hospital because after a massive stroke. Both were intubated against their DNI, because the family panicked and wanted to "give them a chance." If nature had taken its course, they would have died at home within hours. Not in the hospital after days. It was quite sad in both cases.
Of course, everyone does.
Why? Because home is where you feel comfortable, where you feel loved.
"But this leaves her brother and me in a conundrum. What if she doesn't die?"
My Mother has said very similar. They just can't fathom all the possibilities. Nobody can KNOW their future. Their *wish* is just that: a WISH. (Your Mom would know you actually cannot control these things).
"What if it takes days and days for her to die? Can we legally honor her wishes?"
This is how I have rationalised it - a rough plan (if I got to choose that is).
- Pass at home = wish granted. (Whether this be peacefully at rest or an instant event).
- Very ill at home. Call EMS. Listen to EMS advice. If dealth imminent, respect DNR & stay put - have EMS note this.
If not imminent, take EMS advise. If this includes transfer to hospital - so be it.
- Lingering in hospital.
If that happens, discuss with Medical Team. Move to Comfort Care approach.
- Bring home if possible. IF hospital bed, equipment, enough family + staff can be arranged back at home. If possible, do so.
If not possible, then no.
People very unwell are not concerned with the actual room but more with family coming to see them & hold their hand. People slipping in & out of consciousness want peace. This is from my experience working with palliative patients & own family.
Don't get twisted up in ensuring Mother's exact wish gets granted. Just show your love at the time. ❤️
PS People that *wish* to die at home can & do make a 11th hour change of mind. To stay wherever they are. Especially if they land where the staff are kind, pain is controlled & family can visit.
PPS I've seen family try to move heaven & earth to get someone home to die, despite the person no longer minding. Don't put yourself through that.
BUT she should have her wishes in writing.
There is a form called POLST (known by other names in different States, check your State for the form or ask her Doctor)
The POLST is a Physicians Order for Life Sustaining Treatment.
It is VERY specific as to what actions are to be taken.
It is completed by your mom (if she is cognizant) and signed by her Doctor or other Medical person that is authorized to sign such a document. (In the State of Illinois there used to have to be a Witness to the signature but that has recently changed)
Just know that once that form is signed it should be with her at all times, you should have a copy and a copy should be posted in the house.
If 911 is called and the form is not there the paramedics will do what they have to do to revive her, legally this is what they have to do. And to do CPR or intubate will probably go against her wishes.
The POLST can be revoked if she changes her mind. But once the form is signed you can not go against her wishes. (at least you shouldn't, you might argue that she was "not in her right mind" when the form was signed)
If she has a Stroke or Heart Attack and survives but does not recover fully she could then use Hospice to provide comfort care. Usually on Hospice a trip to the hospital is not ordered.
You want to get all the legality taken care of or she will create an investigation and autopsy at her death. It's the law, all unattended deaths must be investigated to ensure natural causes and rule out foul play.
If your mom doesn't want to address this or let you be involved, you have to tell her that you will call 911 and she will be at the mercy of the hospital because you aren't going to jail for her. So, stroke or heart attack will land her in the hospital and on to a nursing home if she chooses not to take care of this happening legally.
Mercy killing is still killing and it is illegal. Please protect yourself and ensure her wishes can be fulfilled.
Of course, her comment of "put a pillow over my face" is *very* illegal.
But there is a logistical side to this that you and your family need to consider.
Unless mom is under hospice care or has a doctor who is willing to sign off on her death certificate, sight unseen, then if mom dies at home, it might very well not be a matter of just calling your local undertaker to remove her body.
Depending on the laws of your state/county, if there is no medical person willing to sign off on mom's death, then likely the county coroner will have to respond to collect her remains and remove them for investigation/autopsy. Which may mean a police presence in your home, or your mom's body remaining in the home until such a time that the coroner's people can come to retrieve it and an investigation into the cause of her death be done.
Before my mom was under hospice care, she had filled out a DNR. Much like your mom, she had told us she didn't want extraordinary measures taken. So I cornered her cardiologist and asked him point blank if he was willing to sign off on her death certificate, should my mom pass at home. I made sure I had that assurance in place, because I didn't want to risk my mom's body lying on the floor in my house for hours.
Sometimes it's not the worst thing for a LO to be removed to the hospital and declared there. Sometimes, that really is the easiest thing for the family.
Another scenario is about pain. People can die at home but a pain level of 10 may be too much. Sometimes she will need meds to die in comfort.