Treating (or not) disease in Alzheimer's Patients

Great Debates
1

My mother in law has alzheimer’s. She 96, lives with us and we take care of her.

We recently ended up in the ER with her with a possible UTI (it was not) days later the hospital called and said she had a “possible infection in her blood” and wanted us to bring her back to the hospital for more blood tests. The whole ER visit was a nightmare. She screamed and had to be held down for them to do anything. Even putting the stickers on her chest for the EKG caused her to scream as though she was being tortured. (and I know sticking them on isn’t painful. Taking them off is a whole 'nother story). She eventually had to be sedated.

So my husband and I founds ourselves talking about about the “possible infection” and what to do about it. She’s not exhibiting any symptoms, not feverish, nothing else. We have a visit scheduled with her regular doctor on Wednesday and will ask her advice then. We really don’t want to put her through another ER visit. It was traumatic for all of us.

The greater debate though is this: Why do we continue to treat alzheimer’s patients for chronic and acute illnesses? It is as though we are compelled to keep the body alive as long as possible even as the mind slips away. Visit any facility that houses and treats alzheimer’s and dementia patients and most of the patients will be on standard preventative treatements like blood pressure and cholesterol meds or blood thinners. If Alzheimer’s is terminal why wouldn’t we stop treating other diseases and infections?

Is it unethical to refuse to treat illness in alzheimer’s patients? Is it unethical to continue to keep their bodies alive at all costs?

I go back and forth mostly thinking about who decides and how and when? A patient with diabetes would die rather quickly with no treatment. Stopping the high cholesterol medication probably isn’t going to make difference in the short term.

And maybe the answer is whatever health care directive the patient set up while they were healthy. Personally, I don’t want to live with alzheimers or demetia. I’d like to have an exit strategy but that’s just me. I know people who want to be kept alive at all costs.

To treat or not to treat, that is the question.

2

OK, I’ll weigh in based on my experience with old/terminally ill/chronically ill people I’ve known where I’ve been part of the decision making team towards the end.

I’m sure I don’t have to tell anyone dealing with any form of dementia that it’s not an on/off situation, one is not perfectly fine one day and completely demented the next. In the early stages I think it’s worthwhile to treat whatever other illnesses are present or arise because in the early stages there is still a quality of life, things can be explained to the patient, and there is (usually) an overall benefit to doing so.

But I gather that you MIL is in the end stages. AND she’s 96.

There is also the problem of who exactly is making the decisions here. Normally it’s “the patient” but it would seem your MIL is not longer competent to make such decisions. Who is her legal guardian or equivalent? You may need to get that clarified, now, before going any further. It may be your spouse. It may be someone else. There may not be a truly legally designated person but she really needs that at this point.

I think it’s time to question whether or not all this treatment is in MIL’s best interests. Have you considered hospice? If not that, my husband’s last hospital had an option called “comfort care” which was sort of like hospice in that the goal became comfort rather than cure, but had some differences (including that our insurance company was more willing to approve that than hospice for some stupid-ass reason). That would focus on keeping her comfortable, whatever that requires, including NOT taking her to the ER ever again… and yes, that may be fatal but you are talking about a 96 year old woman with late Alzheimer’s. SOMETHING is going to get her in the end and statistically she’s already beaten the odds by living significantly longer than average.

And I don’t have to tell you that the medical system is biased towards treating, treating, and more treating of anything and everything. And that is why “we continue to treat Alzheimer’s patients for chronic and acute illnesses”, because of bias built into the system. And many of those patients are past the point where they are competent to say yes or no, but have no other interested party to stop the treatment train for them. The medical system defaults to “treat”.

So, when the hospital calls and says she needs to come back in for more tests you need to ask “How, exactly, is this supposed to benefit her?” Explain that you have a very old, frail, demented woman who is not currently showing signs of suffering who WILL be traumatized by medical tests. How, exactly, is this going to help rather than hurt her? Is this in her best interests?

You DO have an option of keeping her as comfortable as possible while NOT treating an infection with an aim to cure. And yes, that could be the end - I do not want to gloss that over. On the other hand, you know the end is coming. If it must come, would she be better off in familiar surroundings where she is less afraid, or in a strange hospital room with strangers being subjected to painful and invasive procedures she can’t understand?

If you DO take the “treat less” option then be sure there is a DNR and/or other relevant directions written down, witnessed, and signed and copies at all facilities involved with her (personally, given the violence of an attempted cardiac resuscitation and typical side effects, I question if anyone 96 years old should be subjected to that, but that’s just my opinion). I don’t have to tell you that this is not a decision to be taken lightly, but you can say “stop” to continuing treatment and interventions.

There should be a social worker at either the hospital or the nursing home (or both). Contact that person to discuss this, and to get the needed paperwork in place if you decide this is the time to treat less rather than more.

Yes, I’m dancing around which direction you should go on this, because it’s a decision that has to be made by the people involved and not by a stranger on the internet.

3

Good question. For me, it’s very personal - my wife’s grandmother, 93 years old, is deep into Alzheimer’s, and before her mother contracted her final illness, she’d been starting to show signs of dementia. And my mother, 91 years old, suffers from fairly severe dementia that may or may not be Alzheimer’s.

We don’t have a good idea of what life with Alzheimer’s is like for the Alzheimer’s patient. Someone suffering from cancer or ALS can tell us what they’re going through. The dementia sufferer, after a certain point, cannot. Which puts us in the position of making decisions for them.

Consequently, I think a certain amount of humility is called for. Because we can’t know what their inner life is really like, we need to give the benefit of the doubt to the possibility that they may be OK with life as they experience it, and treat them normally for any unrelated medical conditions that arise.

When a patient reacts to treatment like the OP’s mother does, especially one with her limited life expectancy under any circumstances, there’s a real question of whether the cure is worse than the disease. But speaking as one who just lost my MIL to an infection that wouldn’t let go (13 days from seemingly fine to dead, dammit), these things are not to be trifled with. If there’s any reason to believe she’s got an acceptable quality of life absent the infection, for God’s sake, make sure they find out what’s going on so they can kill it.

Now if you found out she had, say, stomach cancer, I could see the point of asking whether it’s worth subjecting her to chemo or radiation treatments. But really, treat her for this potential infection, if at all possible.

4

Thanks Broomstick for your thoughful response. Yes, my husband is her health care proxy so we are making decisions about her care. That’s what started this debate.

For now she’s fine. Rather than another trip to the ER, we opted to see the primary care doc on Wednesday.

It is just curious that doctors never or almost never recommend that patients with advanced alzheimer’s/dementia stop taking their preventative meds. but RTFirefly makes a good point. I don’t really know what she thinks about her life. She’s anxious a lot and I do know that she’s afraid of dying, every time she is hungry she’s sure she’s going to die of hunger and seems terrified. (we are not starving her, we give her food whenever she asks in case any one is wondering)

I’m realizing that I need to make my choices and concerns known to my husband and daughter so that if/when I’m in a similar situation they know that I’d rather not be kept alive once my brain turns to jello.

FWIW, her mother lived to be 102 so there’s probably a few years left to continue this debate.

5

If your hub is the Healthcare POA and if it’s been activated as such, your hub can arrange an appointment with a palliative care specialist and help decide what treatments/meds/procedures should and should not be considered, used, etc.

Me, I’d advocate for minimal curative interventions if I was in this situation I’d personally want; no antibiotics for infections, no meds to control BP, NO CPR NOINTUBATION NO CHEST COMPRESSIONs, and pretty much keep it to ONLY those drugs/interventions that would make me more comfortable. The palliative care specialist team would help see I got just that.

6

I used to work for a hospital system, supporting the medical records applications. The hospital wanted to put a sticker on the charts showing that the patient had a living will on file, with instructions about the circumstances under which the patient was not to be resuscitated. The doctors fought like hell to keep that from happening - they did not want to know.

I recently underwent surgery. They would not perform the procedure unless I signed a document saying that I was revoking any DNR I had in place for the duration of the surgery.

Doctors want to treat you. Maybe it’s greed, maybe it’s tunnel vision - I suspect a lot of it has to do with the fact that it is much easier to sue a doctor for not treating than for treating. And not all doctors do it. But it sure does happen a lot.

I think this puts it rather well -

My grandmother was 83 and far gone in dementia, and when she had a stroke, they wanted to put in a feeding tube. My father, who was her next of kin, had to push pretty hard to keep that from happening, and still some people tried to guilt him.

I’ve said it before, and I’ll say it again - we need death panels. Someone needs to take the responsibility of saying “enough is enough”, and saying it even in the teeth of relatives who are in denial, doctors who can always think of something else to do, and lawyers who slaver at the thought of a million dollar settlement.

Regards,
Shodan

7

I think it was 3 or 4 days prior to my husband’s death his kidneys failed. Me, my sister (she didn’t have official standing but she IS a hospice doctor), and his oncologist all concurred that, well, it was yet another thing going wrong and came up with a strategy to keep him comfortable with no kidney function (basically, WAY cutting back on the IV fluids) without inventions (i.e. dialysis).

Settled, right?

No, another doctor confronted me and said I HAD TO put my husband on dialysis RIGHT NOW!!!

I said no.

HE’S GOING TO DIE IF HE’S NOT ON DIALYSIS!!!

And I looked at the doctor and said even if he IS on dialysis he’s going to die. He’s not going to last even a week. No matter what we say or do he’s going to be dead by this time next week so what’s the point of putting him through dialysis since it won’t do him a damn bit of good?

Shocked that doctor into silence, it did. And I walked off… and went and asked my sister and his oncologist if I had done the right thing. Because no matter how sure I was, there’s that nasty, nasty toxic form of hope that if I just do X there will be a miracle and it will be alright…

Yeah, I was right - he died before the week was out. But not because I refused a form of treatment for him. He died because he had terminal cancer that we don’t have the means to fix. He also died as comfortably as we could manage (a half an hour before he died we asked him if he was in pain and he said no, he was comfortable). I don’t know if that would have been possible if we were trying to wheel him down to dialysis a couple times a week, when moving him at all at that point could cause him a great deal of pain even with pain meds. I doubt it.

The point of this anecdote is that no matter what decision you make someone, often someone with a string of fancy letters after his or her name, is going to come along and second guess you. And it can be hard to stick to your guns when a medical professional who is unquestionably better educated than you in medical matters tells you that you need to do something or that you are wrong. There are plenty of doctors who fear death. It’s not just greed, or just that they’ve been taught to do things a certain, or whatever - doctors are human, too (well, maybe not our favorite Mercotan :wink: ) and have their fears and hangups just like the rest of us. I guess that’s a warning, too - no matter what you decide, someone is going to second guess your decision, so be ready for that.

On the other hand, a lot of medical people supported my decision, too - there was an ER doctor we’d seen a few times before who, the last time my husband went through the ER, actually gave a sigh of relief when I told him comfort measures only. He doesn’t like, as he put it, torturing the dying even when well-meaning relatives request it, doesn’t like doing CPR on people over 90 and smashing up their ribcages to get a failing heart going again (that morning a 103 year old woman had been brought in with EMTS doing CPR on her… she actually survived in the sense her heart was beating again. Of course, her ribs and sternum were broken, too, she was unconscious, likely would never wake up, but with no DNR they system had no legal choice in the matter). When I then started to question every test and med (“How is this going to make him more comfortable? Is this necessary? Will this cause him more pain and if so what’s the pay off?”) he chuckled and said when his time comes he hopes he has someone like me in his corner.

The nurses were absolutely super that last week. I think some of them were happy to have a chance to do hands-on care that involved making someone feel better rather than needle-sticks and handing out pills.

It will take more than “death panels”. It will take a paradigm change in society where we get past the notion that medicine can fix everything, where relatives who make the hard decisions aren’t second-guessed and pressured to change their minds (ditto for patients who are still competent) and we accept that everyone dies in the end, of something, and if we can’t “fix” a person we need to focus on their comfort rather than chasing false hope. At some point the goal needs to shift from “cure” to “comfort”, and we need to see it as just as much a victory as a cure and not some form of “giving up”, because it isn’t. Maximizing the quality of my loved one’s life in his or her last few days is just as much a victory as a cure for cancer or heart disease in my mind. Having my husband’s final moments be with me in a sun-filled room over looking trees and the prairie, with his hand in mine and my head on his shoulder, with no sounds intruding other than the voices of family and the sounds of his favorite music box was a far better end and a victory over him lying in a windowless room in an ICU with more and more tubes and wires between him and human contact, with alarms and buzzers going off all around him.

::: brief pause involving a box of tissues :::

**So, think about the end your MIL would want, and try to find a way to make it happen. It’s the last, great gift you can give to someone. **It doesn’t matter if that end is this coming Friday or six years down the road or whatever, you can set up the machinery to help make it happen now, and it’s probably better to do it sooner rather than later. Of course it’s sad, death is always sad, but it’s also enormously rewarding as well to give someone a good send off.

8

I went thru this with my mother this summer. I would suggest you talk to a certified hospice group. The services they provide are amazing and free under medicare. They provided my mom with a hospital bed, drs, nurses, and social workers and personal needs material (adult diapers). They provided consoling for me and even a volunteer couple who came to her assisted living place and played music for her which she loved.

She was taken off of all drugs that didn’t add to her comfort. Do 90 year olds really need to take cholesterol meds? She died in no pain while holding my hand. They can provide these services at your home.

9

Hospice/palliative care teams are fantastic at managing end of life issues, so as I noted in my previous post, get them involved!

10

I don’t think there is a definitive answer to your ethics question-it depends on the individual.

My parents both had advanced healthcare directives, so that we knew exactly what their wishes were, when they could no longer advocate for themselves. I am very glad they had these in place so we didn’t have to decide for them. For me, I would not want to be kept alive if I had advanced alzheimers. It’s all about quality of life as far as I am concerned.

Defensive Medicine is why doctors insist on providing treatment. Understandably, they don’t want to get sued so they cover their ass.

11

Sorry I’m late.
{{{{{Broomstick}}}}}

The bolded/underlined above is how my Mom went out. Only one doctor in the ICU so much as hinted vaguely that the end was near; she died two days later.

Every other doctor kept pushing and pushing, trying to give us hope, saying that “there’s still a chance!”

Yeah.

12

Here’s what I don’t understand, if we can create a legal document such as a Do Not Resuscitate order, covering end of life choices why can’t we fashion one to cover how we’d like our exit managed if we have dementia or Alzheimer’s? Yes, there would be some challenges, and checks and balances would need to be in place, but we’re facing huge care costs for an enormous cohort of baby boomers all of whom seem to agree, they don’t want to linger once their mind is gone, bankrupting their estates and torturing their families who are left to watch.

Yeah, I understand, it would be difficult, but it doesn’t seem entirely impossible to me. Why can’t I make a document where I set the benchmark for, ‘when it’s time’. Like, can’t speak, feed myself, recognize anyone, respond to questions, or manage any of my daily functions. If I name three people (none inherit!), who must be in agreement, and I’ve preselected my drug of choice for my exit, (to be done in my home, by a liscenced nurse practitioner/palliative care professional, in the company of one of the three deciders), then why CANT I have it my way? It would be more merciful it seems to me!

Think of how many people are eying their senior years, racked with the fear that it will end as they saw their parents die, after a long, long period of suffering for the entire family!

If this decease ravaged your family, wouldn’t such a set up give you peace of mind? Would you use such a legal instrument if it was available? I think I would, happily.

I cared for my MIL, in my home, for six years following a stroke that left her fully bedridden. She needed a lot of care. Easily 2/3 of the people who visited, volunteered that if it was them, they’d rather just have it ended!

I don’t understand why there isn’t a movement to produce an acceptable legal document to handle this end of life circumstance, considering how many people seem to prefer mercifully ending life, over extending it, in such cases.

13

You can. You can already do that.

With the qualification that you can’t authorize your own euthanasia, you can draft a document right now specifying when you want to go from “find a cure” to “comfort measures only”. You can be as specific or general as you like.

People don’t, though, because, first of all, they aren’t aware that’s possible, and second, it require thinking about illness, disability, and death which is hard to do and usually uncomfortable.

14

But I don’t want, ‘comfort measures only’, which could entail months/years more of a life I don’t want to live! This is NOT what I’m talking about at all!

I want to direct my end of life choices. I want to be able to say when I reach ‘here’, as overseen by the three so designated, I want it ended ‘in this fashion’, by a caring professional!

15

If you’re bedridden and given “comfort only” you’re not going to live years. You’re going to be taken down by a UTI or pneumonia much sooner than that. Specify no treatment of infections by antibiotics, you won’t live “years”.

Yeah, I get that you want a document that states when you’ll have someone else kill you. Where medical suicide is allowed you might be able to get that one day, but I suspect not under current laws, and certainly not in the US.

16

I think this is key. I’m thinking of my paternal grandmother here, for instance: When she was younger, she once told my mom that she didn’t care if her mind went, so long as she kept her looks. And sure enough, her mind went. But at the end, well, she looked like an eighty-something woman, but she looked like a stunning eighty-something woman.

Now, would I make the same choice? Absolutely not. But she was still getting what she valued out of life.

Of course, the corollary of this is that all of you healthy, sound-minded people out there need to make sure that you make your wishes known now, while you’re sound-minded, to your loved ones and health professionals. If you wait until you need to tell them, it’ll be too late.

17

I don’t know why you would believe such a thing. I cared for my fully bedridden, stroke paralyzed, MIL. For six years. She never had a UTI, or a bedsore, or needed an antibiotic.

Comfort measures CAN mean several more YEARS of life, I’m afraid!

18

Has anyone around here spoken with the healthcare providers who advocate/perform heroic measures on bedridden demented seniors? What are their motivations? Because I surely don’t understand what they could be.

From my limited experience with the people who make the (IMO inexcusable) decisions to provide such care, I’ve encountered religious beliefs, sentimentality, and other forms of ignorance. Add in that in most cases the survivors have no skin in the game - the public foots the bill for the additional surgery and ICU stay.

Not a great analogy, but compassionate people put their pets down when their lives reach a certain point. I have NEVER encountered someone who later felt that they pulled the trigger too soon, but I’ve known several folk who realize they should have done so earlier.

Not only do my wife and I have DNRs, but our kids have agreed to help us shuffle off this mortal coil should we be unable to do so ourselves. My personal opinion is that keeping alive the shell of what used to be a human is inexcusable. As noted above, we need “death panels”, and more palliative/hospice care than heroic treatment.

19

While it is always suspect to make assumptions on this board, I will start by saying that I believe I understand the sentiment of this post. We do need someone to step in and say ‘enough’ when things get bad for someone at the end of life.

There is a slight problem however in that you fail to recognize that actual death panels, not the Obamacare bogey man, already exist. The problem is that the death panels and their members like to abrogate their duty to make difficult decisions. These death panels also refuse to take any responsibility for the decisions that they make or did not realize they were making by doing nothing.

Each of us have already been assigned to the death panels of our immediate families and no few friends. If one really wants to be a busy body, it is possible to volunteer for the death panels of extended family, friends, and politically or religiously symbolic persons.

Doctors do not treat non-decisional terminal persons because they have some monetary interest in the decision. These doctors treat such persons because the system is set up to follow the wishes of the ‘consumer’. If the consumer is non-decisional, then the death panel has to step in. If there are no clear directives from the patient and/or the death panel disagrees, the default is to take the more treatment route. As it should be. Last I checked death is irreversible and no one wants to live with the “oops, I forgot to answer a text from the doctor on keeping mom on ventilator” error.

The problem isn’t doctors or attorneys here, it is us.

20

No, we are not de facto ‘death panels’ for our Alzheimer’s addled loved ones. Those in a coma, on life support, requiring extreme intervention…perhaps. But there is no such mechanism for those who can live for years, as their families suffer financial hardship/ruination and are forced to simply watch in horror, waiting for the end to arrive.

We should be more merciful for everyone involved. A legal instrument should exist. A medical professional should be permitted to act as and when, the patient specifies in such a document.

Sorry, but it just seems so self evidently, both merciful and wanted. Maybe we’re not evolved enough yet. We mercifully end the lives of our animals when it’s deemed needed though. Somewhat routinely, in fact. Without oversight or legislation.