Not hypothetical, this is the exact situation I’m facing with my mother. And I know I’m far from alone.
So what is useless care? That depends on the person/family. Like I said, mom and I had this conversation many times many years ago. So for us, a quick list, definitely no CPR/ACLS. No dialysis. No ICU intubation for pneumonia. No force feeds. No IV fluids. She will eat and drink what she wants with encouragement from an aide. Antibiotics for a “simple” infection but will avoid hospitalization and IV antibiotics. Definitely will not treat sepsis. The list goes on and on but you get the gist. At least for us. Comfort care.
Also been around enough to know it is hard to apply group statistics to an individual. Yes the average is blah, blah, blah, but you have to apply to the individual and even then it is a guess. Last time I looked, mortality rate was around 50% within one year after falling and breaking a hip. Granny fell and broke her first hip at 90. Broke her second hip at 95. Finally passed away at 98, lucid till the last 6 months. Looking at her, she was the typical “little old lady” and you would’ve lost a bet taking the averages.
Enough rambling. Like I said before, best thing is to talk this over with your family and let your wishes be known. Even write them down if at least informally.
Mrs. Goofy did hospice volunteering for about 5 years, and it was mostly so the still caring spouse could get a break for a few hours: get the groceries, have coffee with some friends away from the home, that sort of thing.
But she has bad stories to tell: people in terrible pain, drugged up on morphine and whatever else, not really in this world at all but not gone yet either. She finally had to stop, although she found it satisfying at times and made some friends.
It did make us cognizant of having a written “life care plan” which copies reside at our GP, lawyer, two nieces, and a nephew, who are charged with overseeing the estate disposal should we both go at the same time in a car accident.(To be clear, we have a company which is to do that, but the relatives are charged with “overseeing” them, just to keep them honest. Everyone gets paid for the thing: the relatives get a modest stipend in addition to the inheritance, which is even more modest, and the estate company gets a low low percentage of assets.)
And yeah, we both sign off early in the case of major decline. DNRs and all that.
JLC answered beautifully. I had two cases, my father and my mother.
My father was in a long coma after surgery for stomach cancer. Before the surgery, after being diagnosed, he knew he would not make it. He told me he was OK because he had lived like he wanted to. His sister had the stupid idea of giving him a transfusion and convinced the nurse to get it done. I had a talk with the doctor (who had not taken part in the transfusion). He told me the only treatment was to relieve suffering as much as possible. I gave strict oders that there would be intervention not authorized by the doctor.
My mother, 93, living is a retirement home, said to me “This is not fun anymore.” She asked about Dr. Kevorkian, aka Dr. Death. I said (right or wrong) “That is not allowed in our culture.” A dear friend of hers wanted her to have a medical exam. The doctor said he would need to take my mother to his clinic. Since he could not guarantee he could cure my mother I refused. A few days later she passed away peacefully with me at her side.
Each family has to decide what is right for their loved ones. In general terms I’m against useless medical procedures but I cannot decide for, nor want to decide, for others. Listen to your loved ones. Talk to your doctor, and hope you made the right choice. I’m OK with mine.
BTW, my mother survived three husbands and two world wars. Quite a lady!
Hysterical family members will almost always ignore DNRs or any other instructions. That’s what they did to my grandfather, he was in a mental decline for a few years, then a rapid physical decline. But his wife and some of his kids couldn’t let go and instructed the doctors to “do everything possible”. And they did. They put him on a respirator, and then since he was located in an inconvenient location for the kids, they contracted a medical Air outfit (I never saw the pricetag, but likely to be well over $10,000) to move him a few hours away so “he could be near them”. Since the hospital bed didn’t fit into the bedroom, they removed the dining room table and put the hospital bed there. And my grandfather lay unresponsive on the respirator in that bed for nearly 4 months. That’s NOT what he wanted, a few years earlier when he was still partially lucid, I clearly heard him say “when the time comes, please let me die in peace”.
Many people have no experience of death except as something horrible that must be avoided at all costs both as to the dying person and as to the family and friends.
Regularly visiting the ill and dying from childhood on changes that. I was 5 years old when I held great grandma’s hand as she lay dying. I was taught then that my visit was a sacred blessing for both her and me. I experienced it exactly as I was taught — something solemn, on the edge of horriific, but transformed by love.
BUT, that crux attitude is almost totally missing in “modren times”. It takes work.
My experience with my wife was as unique as each of the other stories here.
She fell and broke a bone in her skull which got infected. That led to meningitis. She told me many times that she didn’t want to have tubes for breathing and eating keeping her alive. I informed the ER nurse and MD of her wishes, which they honored. Mostly. Overnight, she had a low oxygen saturation episode. Normally, they would have intubated her, but they put her on a bipap machine instead. After a day, the intensive care doc let me know that she wasn’t going to recover. I had to authorize the removal of the bipap. It took her a couple of hours to pass, with a significant morphine dose to make sure she was comfortable.
To this day, I wonder if the doctor was assisting. I saw him order the morphine. I watched the nurse set up the IV. Then a few minutes later I watched the doctor check the IV and increase the dose. By how much, I don’t know.
What I do know is that she was unconscious and unaware. And she had been that way for two days or more. She had been in agonal breathing, which the bipap had compensated for. I also know that it was incredibly uncomfortable to watch even though I knew she was unaware and not feeling pain.
I suppose the lesson to learn is that requesting no intubation may not be enough.
He is not talking about taking food and drink away. He is talking about the patient stopping eating and drinking. It is usually how people pass.
Separately with Dad, Mom and I went into a meeting in the ICU about CPR. Patients in their 80s in hospital going through CPR will have broken ribs and worse. CPR probably will fail. If it succeeds which are very low odds, 50/50 the patient is a vegetable. CPR in my opinion is something to completely avoid.