Not medical advice - just trying to figure out what is happening with her treatment.
My husband’s 86 year old grandma has well-advanced Parkinson’s Disease - she was given a couple of months to live a couple of weeks ago. Since then, she dislocated her hip and was hospitalized, and has had at least one serious but unspecified infection since then, at least one small stroke, and has lost the ability to swallow, speak, and move on her own at all. Her doctor and family are pretty sure she isn’t going to be alive in a couple of days (we were there while a priest gave her last rites today). My question is regarding her medical treatment at this stage.
Since she can’t swallow, she has been taken off most of her meds for high blood pressure and the Parkinsons - I think all she’s being given is KCL, NaCL and an intravenous tranquillizer to calm her down. She hasn’t eaten in two days now, and is on extra oxygen. Her breathing is quite laboured. Are the doctors giving her minimal medical treatment so she can pass away more quickly? No one has a problem with that; I’m just wondering why she isn’t being given any sort of nutrition and what kind of care is usually given in a situation like this.
I’m not really in a position to talk to the doctors - I’m basically there as support for my husband. I’m just kinda curious as to what is the rationale here.
This sounds about like the treatment my mother received - supportive and to keep her comfortable. The only BP medication she received was a diuretic; she was in fluids and on an IV morphine drip to ease the labored breathing (as I recall, the logic there was that her breathing struggles were actually counterproductive and making her oxygen sats lower, so the reduction in struggle actually helped).
I admit I don’t entirely understand the reduction / omission in blood pressure medication, as that would seem to make the final stroke likely to happen sooner, but maybe the logic is (and was in my mother’s case) that “she’ll pass away sooner, no point in doing anything to prolong this comatose state”. It would seem that an IV blood pressure treatment would be reasonable. I was not the one who had “medical directive” authority in Mom’s case so I was not in on that discussion.
My grandmother specified “no special treatment” when she was dying. No Special Treatment, as far as I understood, meant no hospital (she was in a nursing home), no feeding tube, and no resuscitation attempts. The doctors gave her morphine for her pain, but that was it. It still took her a long time to die. It was terrible.
In many cases such as you describe, care is limited to comfort measures, such as the fluids necessary to combat the discomfort of thirst and painkillers as needed. This is (or should be) done with the consent of patient/medical power of attorney as applicable. This is also generally considered to be a form of hospice care.
Elevated blood pressure, infections, and other processes are generally not treated, because to do so is futile and merely prolongs the patient in a state that is not to be desired. The only exceptions would be if such treatment improved the quality of life, as in diuretics to reduce breathlessness.
That’s my take on that sort of general situation. Of course the devil is in the details.
I think that’s exactly the treatment she is receiving.
meow meow, I’m afraid that Jim’s grandma will take a long time to die, too. That doesn’t sound quite right - we’re all afraid that she has no hope of recovery, and that she will suffer for weeks instead of passing away quietly in her sleep soon.
Thanks for the info, guys. Getting old and dying is a bitch. The older I get, the more I realize how true that line is - “The best you can hope for is to die in your sleep.”
I’m working on a ward that usually has a few terminal patients (it’s a Cardiology ward, so usually the patients have either poor results from previous resuscitation attempt or they have terminal heart failure).
Once a decision has been taken that someone is dying, they are put on a “Care of the Dying Pathway”- your hospital may use a different name, but staff should be following clear protocols.
Where I work the care pathway involves:
Patient moved to a private side room
No medications that aren’t providing symptom relief (i.e. analgesia and oxygen OK, cholesterol lowering tablets, not OK).
A formal DNR order
No monitoring (i.e. no ECGs, no SATS probes, no temperature checks, no blood tests)- this means that the dying person is allowed to slip away peacefully without alarms sounding and that the family isn’t disturbed every hour for routine observations of vital signs.
No food unless the patient asks for it and is physically able to eat it safely (most dying people do not wish to eat).
No IV nutrition, only fluids like NaCl or 5% Dextrose as a comfort measure (no IV fluids in a deeply unconscious patient)
No restrictions on visiting (i.e. as many visitors as can fit in the room, 24 hours a day).
Nursing restricted to bathing, dressing, toileting etc.
It’s not about making things happen more quickly, it’s about making sure the inevitable is not prolonged, and that the person is afforded as much dignity and comfort as possible.
Damn straight. Having watched my father and grandmother spend their last few years in incontinent confusion, and my rock-like grandfather reduced to whimpering from arthritis pain whenever anyone touched him, I’m hoping that by the time I get old there’s an option for “no special treatment other than opiates. Lots and lots of them”.
Shitty situation for you and yours to be in, though. You have my sympathies. Wishing for a family member to die isn’t a good feeling, but neither is having them linger on in misery. There’s just no happy outcomes on offer at that stage.
Ain’t that the truth. At this point, she’s sleeping pretty much all the time, but she hasn’t given up the ghost yet. She’s just mostly dead.
My husband’s unemployed aunt (his mom’s sister) needs a slap upside her head - she keeps calling Jim’s mom in a panic and telling her, “Mom’s about to die - get out here right away!” and Jim’s mom keeps taking time off from work and driving two hours out to the hospital, to sit and watch her mom sleep all day, because what kind of daughter wouldn’t go to her mom as she’s dying? Trouble is, she’s been on her last breath since last Thursday. There’s no doubt that she will die soon, but there comes a point where you have to go back to work and wait for the phone call, I guess. This is all very sucky, I must say.
See if your husband (or some competent adult in the family) can talk to the nursing staff to arrange for a warning when your GMIL begins “actively dying” and then tell your MIL to wait for news of that or the actual death from the hospital staff rather than reacting to her sister’s every false alarm. Not everyone goes through a phase of actively dying and it can be either a (relatively) long or short process, but that arrangement might reduce the number of useless four-hour trips your MIL has to make.
It is possible that your GMIL will die without going through that phase, but if your MIL has already visited her multiple times in her current state, she is probably already (as) aware of that (as she ever will be). Obviously, your husband’s hyperconcerned aunt may or may not react well to those decisions, but perhaps the staff can explain it to her. (If they are not already, get a hospice group involved soon to help the aunt (and the rest of you) deal with some of the issues.)
When my father was in the last stages of lung cancer and was in a coma, they cut out the food. Right before that, he was hardly eating anyway. I think morphine depresses the appetite, and the disease had progreesed so far that he just couldn’t eat. Although it bothered me, I knew he couldn’t feel hunger. He didn’t die of starvation, he died of cancer.
February 17, 2000 Da got hospitalized. He was in his third bout with cancer, and ain’t it funny how I pulled the date out of my ear but then checked with the calendar and it was right. We took turns, as much as Mom would allow. At least she didn’t insist in staying there 24/7, which wouldn’t have helped Da none and would have turned her into a rag. Morning of the 24th, I went there with Lilbro and her; Bro had been on duty and had to go to work; Lilbro and myself were unemployed (I’d spent the last two years helping care for Da and holding temp jobs, he was awaiting results on his last college finals). Da turned to Mom and said “I am dying, ain’t I?” She tried to say no but couldn’t; Bro went all white; Lilbro was stunned. I, being the family’s nominal Tuff One, said “yes, Da.” He barked a laugh “good thing it was one of the good kinds of cancer, then!”
He’d been daily-mass, so of course had taken Communion daily during his hospital stay and had confession; he asked for… no, never last rites. We always call them by their full name (it’s a pet peeve of a friend of the family’s): “the anointing of the sick” in Spanish (“unción de los enfermos”). Next morning as I was starting to prepare lunch I got a call from Mom. All she said was “come” - nothing more was needed. I called Da’s best friend and my brothers before going to the hospital myself.
Mom says they’d been talking and she’d been trying to convince him that he wasn’t dying; he’d said “yes I am, and what’s your problem, woman, it’s not like I invented death and I’m at peace. It’s fine.” He fell asleep with his hand in hers. At one point she had a start, looked at him and he wasn’t there any more (her words).
It may be that feeding her would cause her more discomfort than just letting her go without. It sounds like the body’s systems are shutting down. The morphine will keep her in a sleepy/sleeping state so she probably won’t realize much pain. That’s the bitch…watching them linger. Wishing your family peace.
Well, we got the call this morning - Jim’s grandma is gone now. I have to say, Nava, as a non-Catholic and non-religious person, I found the Last Rites ceremony very powerful and appropriate. It seemed like a good way to say good-bye to the dying person while they’re still here, as a complimentary ceremony to the funeral. Jim’s grandma seemed to get some peace from it, too, and that was really good to see.
