How did elder care used to work?

[wathe]

8 minutes ago, Mrs Tiggywinkle said:

 

I know this is my soapbox.  But attempting resuscitation on an elderly body that I know is futile but the family is expecting great grandma to sit up and hug everyone after I shock their fibbing heart is one of the most traumatic things ever. At least to me, and my own personal experience.

Someday my kids will be asked if they know my end of life wishes; if we’ve discussed them. And my kids will be able to say, yep, Mom has been discussing them with us since we were four!

All that to say, if you haven’t, please discuss your end of life wishes with your family.

Obligation to provide futile resuscitation contributes to moral injury in HCW.  Of that I have no doubt

[wathe]

To be fair, there is selection bias in what I see in the ED.

People with excellent end-of-life care usually don't end up in the ED.  They die at home, or in hospice.  So I don't see the denominator.

[Laura Corin]

16 minutes ago, wathe said:

I'll add:  decision making in the kind of scenario above becomes necessarily paternalistic - the patient or POA is simply not equipped to make a genuine, patient centred decisions in these circumstances.

Really great, patient-centred, goals-of-care planning needs time and space.  Patients and POAs need a realistic understanding of their state of health, and realistic expectations about what might happen next, and what the probable outcomes of their decisions will be and  how each decisions will help them to achieve their goals of care.   This does happen.  Some of our nursing homes are really, really good at this.  Our palliative care service is excellent at this.  Doing it well is difficult - it takes a lot of time.  (Time that's usually not properly remunerated for providers.)

Everyone should read "Being Mortal".

Mum's care home talked through with her the implications of resuscitation. And she decided against. She had a living will before she entered the home. And my brothers and I have talked through her wishes. Fingers crossed.

When she had a crisis in the summer, the doctor was called and the family. But she wasn't taken to hospital.  She's fine with simple treatments,  like antibiotics,  but doesn't want heroics. She's 97.

[Katy]

3 hours ago, skimomma said:

I think changing ethics are also a factor.  I am dealing with someone who has dementia but is otherwise physically healthy when properly medicated.  They could very well live for 10+ more years.  But they cannot live alone or even be left alone by today's standards whereas, they probably would/could have 50 years ago.  The reasons they cannot live alone now is that they cannot manage their complicated medication regimen (most of which did not exist 50 years ago) and is prone to getting lost (something that might have been an acceptable risk 50 years ago).  In these times, it is my ethical obligation to protect them from these risks whereas 50 years ago, they would probably still be living alone and called "eccentric."  They will now live in their demented state for much longer due to my "ethical obligation" to be sure they are treated for medical problems that would end their life much earlier 50 years ago.  

I really question why someone with a fatal diagnosis of dementia would want to stay on all of those drugs.  I think most people would rather die from a stroke or heart attack or whatever, not dementia. It might be extra years, but they aren't extra years with what we think of as consciousness. These decisions are so individual I think there should probably be an every few years review.  My decisions now, in my early 40's and with little kids that depend on me would be very different than if I were 90 and got diagnosed with stage 4 cancer.

[skimomma]

12 minutes ago, Katy said:

I really question why someone with a fatal diagnosis of dementia would want to stay on all of those drugs.  I think most people would rather die from a stroke or heart attack or whatever, not dementia. It might be extra years, but they aren't extra years with what we think of as consciousness. These decisions are so individual I think there should probably be an every few years review.  My decisions now, in my early 40's and with little kids that depend on me would be very different than if I were 90 and got diagnosed with stage 4 cancer.

But there is a big difference between treating cancer and taking medications to treat diabetes, for instance.  50 years ago, diabetes would shorten someone's life along with a decreased quality of life.  I believe most would consider it unethical to cease the treatment for a diabetic with dementia.  Or at least non-invasive treatment.  I am not sure where the line would be drawn on dialysis or transplants.  I may find out:(  And while dementia is fatal, it can be a very long time before it kills you.  Withholding treatments for painful conditions, even if those treatments might prolong a demented life, would also not be ethical.

[HS Mom in NC]

20 hours ago, skimomma said:

 

Ethics discussions haven't kept up with the new reality of the long dwindle-that's the problem.  Anyone who has seen this long term sees trapping someone in a state of mindlessness long term is not morally neutral or morally good. It's another evil to choose between. And hospice is there to provide comfort care, so it's not like people are saying leave them to suffer in pain.

We have a serious problem in the US (I don't know about other places) with not talking through all the pros and cons of all possible treatments when patients ARE able to understand them, including the option of doing nothing.  I would say that's universally true with medicine and I'm sure training, legal and cultural influences contribute, putting doctors, patients, and caregivers in a tough position. Then we're up against a bad moral wall when the consequences of those decisions play out because adults didn't bother to think through reality to its obvious end.  Adults. Not children, adults fail to think it through. Add to that mix our amazingly stupid cultural norm of not talking about death.  There's nothing more certain than death, but somehow almost all of the adults in the room (adult patients, adult doctors, adult caregivers) can't seem to address it directly. Why?  Honestly, most Americans are emotional adolescents with famously their magical thinking.

And don't get me started on poor religious training.  If there's anyone who should be able to talk about their own death it should be someone who claims to have religious convictions that include the afterlife.  I just shake my head at what old people do to themselves by not addressing this throughout their lives and what we do to old people because we keep trying in vain to avoid the inevitable regardless of how awful it is.

Edited March 3, 2022 by HS Mom in NC

[Jean in Newcastle]

1 hour ago, skimomma said:

But there is a big difference between treating cancer and taking medications to treat diabetes, for instance.  50 years ago, diabetes would shorten someone's life along with a decreased quality of life.  I believe most would consider it unethical to cease the treatment for a diabetic with dementia.  Or at least non-invasive treatment.  I am not sure where the line would be drawn on dialysis or transplants.  I may find out:(  And while dementia is fatal, it can be a very long time before it kills you.  Withholding treatments for painful conditions, even if those treatments might prolong a demented life, would also not be ethical.

Add in the fact that poor diabetes care directly leads to certain kinds of brain damage and dementia.  It's much better to treat those kinds of things.  It leads to better quality of life even for people with other issues. 

Medical neglect is not always a benign quick death.  Often it leads to a lot of pain and suffering and sometimes it doesn't kill the person off but puts them directly in the path of the slow dwindling death. 

[skimomma]

52 minutes ago, HS Mom in NC said:

Ethics discussions haven't kept up with the new reality of the long dwindle-that's the problem.  Anyone who has seen this long term sees trapping someone in a state of mindlessness long term is not morally neutral or morally good. It's another evil to choose between. And hospice is there to provide comfort care, so it's not like people are saying leave them to suffer in pain.

We have a serious problem in the US (I don't know about other places) with not talking through all the pros and cons of all possible treatments when patients ARE able to understand them, including the option of doing nothing.  I would say that's universally true with medicine and I'm sure training, legal and cultural influences contribute, putting doctors, patients, and caregivers in a tough position. Then we're up against a bad moral wall when the consequences of those decisions play out because adults didn't bother to think through reality to its obvious end.  Adults. Not children, adults fail to think it through. Add to that mix our amazingly stupid cultural norm of not talking about death.  There's nothing more certain than death, but somehow almost all of the adults in the room (adult patients, adult doctors, adult caregivers) can't seem to address it directly. Why?  Honestly, most Americans are emotional adolescents with famously their magical thinking.

And don't get me started on poor religious training.  If there's anyone who should be able to talk about their own death it should be someone who claims to have religious convictions that include the afterlife.  I just shake my head at what old people do to themselves by not addressing this throughout their lives and what we do to old people because we keep trying in vain to avoid the inevitable regardless of how awful it is.

I agree with much of what you say and appreciate your input.  If a person has dementia and the people/persons tasked with making their medical decisions do not know what that person would have wanted (for whatever reason), it is very hard to make decisions that range on a blurry continuum.  Dementia itself is a blurry continuum!  People who are experiencing the beginning stages can still have a high quality of life.  People at the end stages have a terribly quality of life.  But where on the line from point A to point B does the flip happen?  The person I care for has very slowly progressing dementia making quality of life assessment very difficult.

All that said, would anyone even consider ceasing insulin treatment, for instance, for a person with needs-constant-supervision level of dementia?  If no, what about dialysis?  Or transplant?  I have my own line, but I am curious to know what others think?

[skimomma]

43 minutes ago, Jean in Newcastle said:

Add in the fact that poor diabetes care directly leads to certain kinds of brain damage and dementia.  It's much better to treat those kinds of things.  It leads to better quality of life even for people with other issues. 

Medical neglect is not always a benign quick death.  Often it leads to a lot of pain and suffering and sometimes it doesn't kill the person off but puts them directly in the path of the slow dwindling death. 

Yes!  And it can be a vicious circle.  Early dementia leads to poor medication compliance leads to more rapid onset dementia leads to poorer medication compliance.....  That is exactly what happened here.  In the "olden days" the disease would have progressed because there were no medical ways to address diabetes.  But now there is and caregivers/doctors are in an ethically impossible situation.

 

[kbutton]

As someone with a mobile STB 90-year-old grandmother that lives alone and has a very high quality of life, some of the comments on here are shocking and fatalistic. By what's said here, she should have been denied several surgeries in the past five years because she's old. 

As someone whose grandfather did the slow dwindle due to very mild stroke and emphysema with NO LIFE PROLONGING TREATMENTS, I am bewildered.

As someone whose other grandfather chose of his own freewill to stop they cycle of aspirate/pneumonia/hospital due to having smoked for decades, I can tell you that he rued every puff of a cigarette or pipe that he'd ever taken and said so--he was slowing down, but he would've potentially had years and years left in good health. His doctors were totally up front with him about how things would go. 

My grandparent in the most ill health was also living indepedently (and her poor health was from avoiding doctors), died of something super rare and acute that was not on anyone's radar. She was expected to be the horror show everyone here is talking about. 

As someone who had an ancestor with cancer that lived for something like 7 years (in days you all are saying treatment wasn't around), I am gobsmacked. It happened. People lingered with it. That's one reason people are so terrified of it. They think all cancer means the same thing. 

I really don't understand why mortals think they have so much control over their own deaths.

Some of what is being said should make people with chronic health issues tremble in their boots.

SMH. 

I am also wondering if anyone here answering about the olden days has watched Call the Midwife--plenty of people dwindled. Plenty of people needed care for years. 

There were also a lot of people that aged with no family at all. I had an ancestor that took care of these folks. She didn't do total nursing home care, but in those days, you didn't have to be an RN to administer meds to someone who was simply old and needed help with the activities of daily living/personal care. 

This idea of the Noble Death (that there is a clear line between futile and beneficial) is at least somewhat revisionist. I also think it could cause people to prematurely miss out on a lot of life.

I also was under the impression that we're finding out that some causes of dementia might be from previous infections--viral, IIRC, in addition to the ones we've always had (vascular dementia etc.) that are now sometimes prevented by things like statins. For every person that dropped from a stroke, I bet we had another who had dementia as a result. 

5 hours ago, Dmmetler said:

My mother and I were talking about this the other day. The fact is, had she been able to respond, and had the hospital gotten in touch with me much earlier, had it not been a MedEvac level situation where they don’t wait, both of us would have declined that first wave of treatment,  because she had been clear that she didn’t want to go on a ventilator. Once she was on, though, and had survived the first surgery, she’s fought every step of the way. She wants to live, but more importantly, she wants to go home and get her life back. But she’s also stated that she’s added “God, when it’s time to go, please take me quickly” to her prayers, because she has had two months of being totally dependent on others, with hope and clear signs that things were getting better, and doesn’t feel she could handle it without the hope of improvement. 
 

And I have to be honest, I couldn’t handle it either. This has been hard enough. 

Trauma changes the equation because when someone doesn't want to be on ventilator, they usually mean something like brain death and being kept alive by clueless family members. They don't want to be a vegetable, so to speak. I mean, people are put on ventilators for general anesthesia, which might be for something as benign as a scope of some sort. 

[kbutton]

And just a PSA...blood clots happen to people of all ages. People of all ages die in surgery due to freak stuff like that. I had a relative in her 40s code in the OR for an elective surgery unrelated to health (not a cataract, but think something like that). I am sure glad someone decided that reviving her was in her best interest rather than that CPR is futile. And before everyone says, "We're talking about old people," the spirit of the CPR is futile idea has crossed over into general public perception (much like vaccine disinformation), which is a travesty. And no, it doesn't always break ribs (but it certainly can). 

[BusyMom5]

16 minutes ago, skimomma said:

 

All that said, would anyone even consider ceasing insulin treatment, for instance, for a person with needs-constant-supervision level of dementia?  If no, what about dialysis?  Or transplant?  I have my own line, but I am curious to know what others think?

I see insulin treatment or taking a pill very different from dialysis.  Would the person with dementia want to be on dialysis?  Are they aware of what is going on?  Will they sit still while it's administered?  My family member with dementia that just recently passed would not have been able to be hooked up, port cared for, etc.  He would have been pulling the cords out, trying to run away.  Dementia is a long scale, so I guess it depends on where the person is on that scale, and what their wishes would be.  As for myself, if I get dementia bad (as my family member has had), I do not want anything done to me unless it is to help with pain management. 

FWIW, my grandmother actually passed bc she decided not to do dialysis. When it was time to put the port in, she said she really didn't want to do that every 2-3 days for the rest of her life.  Her Dr actually told them all- AFTER grandma made her decision,  that its what he would choose as well,  bc she has so many other issues going on.  She got to go home and die peacefully in her own home,  with all her kids there (and hospice).  

I think we need to take context of what else is going on in the body, what the physical toll of treatment is, and how long it will really prolong a good life.  Ive thought about it and we've encouraged our parents to let us know their wishes now, so we know what they want when the time comes.  If its a car accident,  going on a vent for a short time while the body recovers seems the right thing to do.  Other times its a way to keep an unconscious person alive while a family member travels to say goodbye- but then someone has to pull the plug.  Cancer treatment may give one person 5-10 more years, but for another it may be the way they spend their last days suffering from the treatment (I've watched both scenarios) when they could have just ignored it and let it happen on its own.  I've unfortunately heard family tell the sick one they should do everything they can to keep living- but why?  Just because we can treat doesn't mean we always should- particularly with things like cancer. I don't agree.  There needs to be a constant conversation going on between Drs, patient,  and family about the reality of each situation- and quality of life needs to be the central focus.  

[prairiewindmomma]

55 minutes ago, skimomma said:

 

All that said, would anyone even consider ceasing insulin treatment, for instance, for a person with needs-constant-supervision level of dementia?  If no, what about dialysis?  Or transplant?  I have my own line, but I am curious to know what others think?

Yes.  Family decided to stop a variety of treatments for family members with dementia.  Insulin treatment was one of the last to go, and that happened gradually as she entered formal hospice care, but tight glycemic control is only helpful when life prognoses is in the term of years.  If someone is type 2 and you can manage caloric intake then you can drop back on monitoring and depending on the person, management. In the final days, it's usual to stop all insulin, hypoglemics, etc.  The analysis is a bit different if someone is type 1, as they may go into DKA quite rapidly, but if my family member was unconscious and end stage, I would totally consider it.  Getting stuck with needles when there is no clear big picture benefit is stupid.  I'm already really sick of the needles and the pills and all of the time stuck in dr offices.  There comes a point when you really start to look at quality of life.  For someone who is in middle to late stage dementia, I want to give them all of the joy that I can.  Their days of going and doing things are over and we're talking about the endgame.  Let's have a good endgame, and maybe that is a bit shorter in length, but that's ok.

[JumpyTheFrog]

8 hours ago, Katy said:

When doctors decide these things for themselves they are much more likely to treat aggressively. When deciding for patients they are much less likely to suggest anything aggressive. 

Is this what you meant to say, or did you say it backwards? I ask because I read an article a few years ago (possibly in Consumer Reports) that doctors tend to choose much less aggressive treatment for themselves than they recommend for their patients. I don't remember if the context was limited to cancer or if it included other ailments of the elderly like heart disease. 

[Laura Corin]

11 minutes ago, BusyMom5 said:

  Cancer treatment may give one person 5-10 more years, but for another it may be the way they spend their last days suffering from the treatment (I've watched both scenarios) when they could have just ignored it and let it happen on its own.  I've unfortunately heard family tell the sick one they should do everything they can to keep living- but why?  Just because we can treat doesn't mean we always should- particularly with things like cancer. I don't agree.  There needs to be a constant conversation going on between Drs, patient,  and family about the reality of each situation- and quality of life needs to be the central focus.  

My dad was relatively young when he died - 76. By that point he had been living with polycythemia vera for some years and had had a heart bypass. He then developed cancer which was treated with a series of standard and experimental treatments.  In the end they all failed, and he decided to stop treatment. It was a considered decision which his family supported. He didn't want to die, but he didn't feel that there was a benefit to him of further treatment.

[Melissa in Australia]

7 hours ago, HS Mom in NC said:

That's too bad.  I'm sure it was traumatic for his loved ones.  I'm not opposed to living in a care facility or with relatives at the end, but I don't want that last chapter to run for years in a state of constant confusion where I can't really live and I just wait to die.

My dad (79) is an example of something I didn't really understand. He wants to live completely alone and independently, which I get, but know it's unrealistic.  Usually people need help, even in the old way, for at least a while, maybe a few months.  He has said he wants to die quickly.  10 years ago he was diagnosed with a heart blockage the doctor called The Widow Maker  because it's completely asymptomatic then causes a massive heart attack killing the person before they hit the ground. Sounds like the death he says he wants. Now here's the weird part, he opted to have the surgery to remove it before he told us about it.   I said nothing; he's a grown man fully mentally competent to make his own decisions. But I'm worried he traded the death he wanted and will get a much longer, much more dependent ending where he's absolutely miserable for years.

It wasn’t  so traumatic for the relatives. His brother is my direct neighbour, and the one that found him.  He has had lots of conversations with me and others in the street. We all respect a persons ability to chose when they want to go. 
 

[Katy]

57 minutes ago, JumpyTheFrog said:

Is this what you meant to say, or did you say it backwards? I ask because I read an article a few years ago (possibly in Consumer Reports) that doctors tend to choose much less aggressive treatment for themselves than they recommend for their patients. I don't remember if the context was limited to cancer or if it included other ailments of the elderly like heart disease. 

I meant it that way, but I wouldn’t be surprised if there are regional differences. Even state by state differences. The important thing is to do the paperwork for your own wishes and discuss it with all of your family so no one is surprised. 

[HS Mom in NC]

4 hours ago, Melissa in Australia said:

It wasn’t  so traumatic for the relatives. His brother is my direct neighbour, and the one that found him.  He has had lots of conversations with me and others in the street. We all respect a persons ability to chose when they want to go. 
 

I'm glad everyone was at peace with it.  It's so very hard for people when they're not. 

[HS Mom in NC]

18 hours ago, skimomma said:

 

The not knowing what someone would want is a huge cultural problem that usually starts this whole prolonged torture. It should be a cultural norm that when someone turns 50 they get it into a legal document after discussing it with their doctor and lawyer. (Assuming they can afford it.) And doctor training has to stop focusing exclusively on intervention.  Weighing quality of life issues has to get the same amount of focus.

I advocated choosing at 55 or 60 to stop interventions and preventatives, not years after dementia has taken over. And as to mobility and injury issues, I have no problem taking care of those medically because those are quality of life issues. 

Yes, there are people who do ask what the best case scenarios are when considering interventions, and if those aren't significant quality of life, then they decline for themselves or for those they're caring for. If Granny (82)  is very demented and diabetic and she wants to eat ice cream for dinner every night (real example) she should get to.  Refusing her the happy moments of pleasure eating ice cream brings her every day gives her nothing in return-she will only have more days of no sweet treats and a longer sentence in the hell of dementia where she is confused, anxious, and miserable.   Low blood sugar levels aren't going to improve her quality of life. If her diabetes were cured tomorrow she's still be living in that slow hell.  If ice cream  will cause her diabetes to get worse and speeds her death, so what? Enough of her mind is dead to the point she can't be happy or content anymore.  Why are we intervening in ways that prolong that hell? There.is.no.getting.better. in her situation. Death isn't the worst thing out there. Let her die in peace rather than prolonging her suffering.  We do that for animals. Why do we treat humans worse?

Edited March 3, 2022 by HS Mom in NC

[wathe]

11 hours ago, kbutton said:

And just a PSA...blood clots happen to people of all ages. People of all ages die in surgery due to freak stuff like that. I had a relative in her 40s code in the OR for an elective surgery unrelated to health (not a cataract, but think something like that). I am sure glad someone decided that reviving her was in her best interest rather than that CPR is futile. And before everyone says, "We're talking about old people," the spirit of the CPR is futile idea has crossed over into general public perception (much like vaccine disinformation), which is a travesty. And no, it doesn't always break ribs (but it certainly can). 

To be clear:  I don't think anyone is stating that CPR is always futile.  Of course it's not, or we wouldn't ever do it.  Witnessed arrest in a young, otherwise healthy person is the perfect circumstance for CPR.   My team and I successfully resusced a person in their 50's with CPR literally just a few hours ago.  

But CPR in a dying elderly frail pt with metastatic Ca and a long list of other significant comorbidities (COPD, CAD, CHF, DM, CRF, advanced dementia .... - the list is long) whose family/POA insists on full resuscitation because "they aren't ready" to even talk about death, much less face it? That's futile.  And it happens every day.  That's what I think @Mrs Tiggywinkleis talking about.  She literally feels their ribs cracking, then crunching with every chest compression as she does CPR.  She know what the outcome will be.  It's always the same.  And she has no choice.

(@Mrs Tiggywinkle is free to tell me off for speaking on her behalf, but I think she will agree) 

Edited March 3, 2022 by wathe

[wathe]

Put another way:

CPR buys time to fix the underlying problem that caused the arrest in the first place.

If the underlying problem isn't fixable, then CPR is futile.

*ETA: mitigate might be a better word than fix.  

Edited March 3, 2022 by wathe

[Frances]

14 hours ago, wathe said:

I'll add:  decision making in the kind of scenario above becomes necessarily paternalistic - the patient or POA is simply not equipped to make a genuine, patient centred decisions in these circumstances.

Really great, patient-centred, goals-of-care planning needs time and space.  Patients and POAs need a realistic understanding of their state of health, and realistic expectations about what might happen next, and what the probable outcomes of their decisions will be and  how each decisions will help them to achieve their goals of care.   This does happen.  Some of our nursing homes are really, really good at this.  Our palliative care service is excellent at this.  Doing it well is difficult - it takes a lot of time.  (Time that's usually not properly remunerated for providers.)

Everyone should read "Being Mortal".

My family all lives in this area. Ninety-six percent of people who die there have an advanced directive or living will. And the area has the lower health care spending per capita of any place in the country, partially due to the fact that when people choose in advance, most choose less intervention.

https://www.npr.org/sections/money/2014/03/05/286126451/living-wills-are-the-talk-of-the-town-in-la-crosse-wis

[Frances]

12 hours ago, skimomma said:

I agree with much of what you say and appreciate your input.  If a person has dementia and the people/persons tasked with making their medical decisions do not know what that person would have wanted (for whatever reason), it is very hard to make decisions that range on a blurry continuum.  Dementia itself is a blurry continuum!  People who are experiencing the beginning stages can still have a high quality of life.  People at the end stages have a terribly quality of life.  But where on the line from point A to point B does the flip happen?  The person I care for has very slowly progressing dementia making quality of life assessment very difficult.

All that said, would anyone even consider ceasing insulin treatment, for instance, for a person with needs-constant-supervision level of dementia?  If no, what about dialysis?  Or transplant?  I have my own line, but I am curious to know what others think?

Is it even allowed? Even if you have an advanced directive? I was just asking my husband about this, as we are making plans to again go visit his college chemistry professor. He had a series of serious strokes several years ago and now lives in a locked facility. It’s basically like he has dementia. Physically he’s pretty good, but mentally it’s like advanced dementia. The facility is top end and his wife lives in a beautiful independent senior apartment there. But if something similar ever happened to either of us, we would both want death to come as quickly as possible. So if possible, we would want all medication withheld except for things that helped with comfort.

This story from a few years ago freaked both of us out. Patient’s wishes should be respected. Even at 18, after spending one summer working in a dementia facility, my son knew he would draw the same line as this woman.

https://khn.org/news/dementia-patient-at-center-of-spoon-feeding-controversy-dies/

[Frances]

14 hours ago, skimomma said:

But there is a big difference between treating cancer and taking medications to treat diabetes, for instance.  50 years ago, diabetes would shorten someone's life along with a decreased quality of life.  I believe most would consider it unethical to cease the treatment for a diabetic with dementia.  Or at least non-invasive treatment.  I am not sure where the line would be drawn on dialysis or transplants.  I may find out:(  And while dementia is fatal, it can be a very long time before it kills you.  Withholding treatments for painful conditions, even if those treatments might prolong a demented life, would also not be ethical.

But what if the patient chose in advance to not have life prolonging treatment for any other conditions if they developed dementia? That would certainly be my wish, as long there was attempts to provide comfort care. Painful conditions are a bit trickier to plan for in advance since pain tolerance and experiences vary so widely. 

[Danae]

2 hours ago, wathe said:

Put another way:

CPR buys time to fix the underlying problem that caused the arrest in the first place.

If the underlying problem isn't fixable, then CPR is futile.

*ETA: mitigate might be a better word than fix.  

Thank you for this phrasing.  I’m the designated health care decision maker for my parents, and this perfectly sums up what my dad wants in terms of intervention in a lot less words than it took us to get there.  (Not just for cpr, but ventilators, feeding tubes, etc)

[mlktwins]

2 minutes ago, Danae said:

Thank you for this phrasing.  I’m the designated health care decision maker for my parents, and this perfectly sums up what my dad wants in terms of intervention in a lot less words than it took us to get there.  (Not just for cpr, but ventilators, feeding tubes, etc)

I haven’t read the entire thread.  If these are his wishes, please make sure it is spelled out in writing (POA and Advanced Medical Directive) with a DNR in place.  If he doesn’t have those, it may not matter what his wishes are.  Easier to get done before any dementia type issues are involved.  

[Danae]

59 minutes ago, mlktwins said:

I haven’t read the entire thread.  If these are his wishes, please make sure it is spelled out in writing (POA and Advanced Medical Directive) with a DNR in place.  If he doesn’t have those, it may not matter what his wishes are.  Easier to get done before any dementia type issues are involved.  

My parents did their first round of advance medical directives when they were in their 30s.  My name was added as alternate decision maker when they updated it in their 50s.  The phrasing I quoted does a nice job of summarizing the difference between when they would want a DNR and when they wouldn’t. Right now it falls very clearly on the wouldn’t side and based on family history I expect that to be true for many more years.  

[Jean in Newcastle]

If my genetic history pans out, I will probably live into my 90’s as a vibrant part of society. My dad was preaching until he was 90. His last two years were difficult and he did refuse a pacemaker at 92 which then hastened his death but he was great until then. My mom died at 96- with no signs of any disease. She did have dementia the last couple of years and yes, that was tough. But she was a vital part of our family even in her 90’s.
 

I am doing everything I can to stack  the deck even more in my favor. I look at septuagenarians like Joan MacDonald who are fit and vibrant. I am working hard to increase my fitness level- something that hasn’t been easy. The fitter I am, the less likely I am to have the types of injuries that will severely curtail my mobility and ability to live life freely. 
 

I am working hard to get off medications. Not by stopping needed meds but by eliminating the need for them. Obviously this doesn’t work for all meds for all conditions. 
 

I am working hard on my mental health. I read and puzzle and stay current. I do what I can to reduce stress though there are some severe stressors in my life. My faith is extremely important to me. 
 

I have a lot of friends and relatives in their 70’s, 80’s and 90’s. They are still valuable people. They have varying degrees of health but the ones who take care of smaller physical needs (sort if a medical version of “a stitch in time saves nine “) have much better outcomes. 
 

I know and value advance directives etc. My husband’s job for many years was helping families make end of life decisions including the choice to stop life sustaining measures like dialysis.   Yes, these things need to be addressed and thought through. But I am not willing to throw all elderly and disabled people out. They are important members of our families and society. 

[skimomma]

3 minutes ago, Jean in Newcastle said:

But I am not willing to throw all elderly and disabled people out. They are important members of our families and society. 

Is anyone suggesting this?

[Jean in Newcastle]

1 minute ago, skimomma said:

Is anyone suggesting this?

Yes

[skimomma]

3 minutes ago, Jean in Newcastle said:

Yes

I'm not seeing that at all.  Trying to understand the ethics of prolonged life versus prolonged suffering is not "throwing people out." 

[Mrs Tiggywinkle]

6 hours ago, wathe said:

To be clear:  I don't think anyone is stating that CPR is always futile.  Of course it's not, or we wouldn't ever do it.  Witnessed arrest in a young, otherwise healthy person is the perfect circumstance for CPR.   My team and I successfully resusced a person in their 50's with CPR literally just a few hours ago.  

But CPR in a dying elderly frail pt with metastatic Ca and a long list of other significant comorbidities (COPD, CAD, CHF, DM, CRF, advanced dementia .... - the list is long) whose family/POA insists on full resuscitation because "they aren't ready" to even talk about death, much less face it? That's futile.  And it happens every day.  That's what I think @Mrs Tiggywinkleis talking about.  She literally feels their ribs cracking, then crunching with every chest compression as she does CPR.  She know what the outcome will be.  It's always the same.  And she has no choice.

(@Mrs Tiggywinkle is free to tell me off for speaking on her behalf, but I think she will agree) 

That’s mostly what I am talking about. Witnessed arrests, especially in hospital, have a better outcome when it comes to a neurologically intact discharge.  Out of hospital arrests have something around a 5% survival rate to discharge, and a significant number of those never return to previous quality of life(a lot have neurological /brain damage).  The area I work in has a lot of young cardiac arrests due to accidental overdoses, as we have a large heroin problem.  Families/friends believe that we’re going to shock the patient, do some CPR, and they’ll sit up and be fine, because that’s what’s shown on a lot of TV.  It’s an education mismatch.   (In hospital cardiac arrests have something like a 25% survival rate for a variety of reasons, mostly because quick, high quality CPR and quick defibrillation is crucial)

But as @wathe says—every single day medical professionals are out there attempting resuscitation on elderly, frail bodies with multiple comorbidities. It’s futile, violent, and traumatic to the families.  Some people really absolutely do want everything done and I respect that, but these are conversations that need to happen long before people get sick, elderly, dementia, what have you. 
 

I am diabetic, and even though I’m adamant that there will be a point that I don’t want resuscitative care, feeding tubes, intubation, maybe even antibiotics, I’m also not comfortable reducing or choosing to end treatment and interventions when I’m 50 or 60.  The women in my family tend to live into their 90s in reasonably good health.  But again, these decisions are so deeply personal, but discussions with family and legal documents all need to happen.  Some people truly want every intervention into their 90s no matter what, and I respect that.  I also really want my family to respect that I don’t.  My mom is an every intervention for all times person.  I will absolutely respect that for her.  But she is not listed as a decision maker on my living will—that’s my husband and sister if husband is incapacitated.  Because I know they’ll follow my wishes. 

Edited March 3, 2022 by Mrs Tiggywinkle

[skimomma]

On 3/2/2022 at 9:45 PM, HS Mom in NC said:

 If Granny (82)  is very demented and diabetic and she wants to eat ice cream for dinner every night (real example) she should get to.  Refusing her the happy moments of pleasure eating ice cream brings her every day gives her nothing in return-she will only have more days of no sweet treats and a longer sentence in the hell of dementia where she is confused, anxious, and miserable.   Low blood sugar levels aren't going to improve her quality of life. If her diabetes were cured tomorrow she's still be living in that slow hell.  If ice cream  will cause her diabetes to get worse and speeds her death, so what? Enough of her mind is dead to the point she can't be happy or content anymore.  Why are we intervening in ways that prolong that hell? There.is.no.getting.better. in her situation. Death isn't the worst thing out there. Let her die in peace rather than prolonging her suffering.  We do that for animals. Why do we treat humans worse?

 

Please don't quote!

 

Edited March 7, 2022 by skimomma

[Danae]

20 hours ago, wathe said:

To be fair, there is selection bias in what I see in the ED.

People with excellent end-of-life care usually don't end up in the ED.  They die at home, or in hospice.  So I don't see the denominator.

All of my grandparents died at home.  For three of them I was old enough to be involved in the discussions.  One thing their doctors emphasized was do NOT  call 911 when they die.  Notify their primary care doctor and then call the funeral home. (Obviously these were expected deaths, not sudden or unexplained.)

[HS Mom in NC]

22 minutes ago, skimomma said:

 

 

I'll go back and get rid of the quotes just to be careful.

Yeah, liability issues with  care facilities haven't caught up and patients suffer because of it.  If we'd been more willing to talk about death and end of life care in more real practical terms, this wouldn't be as much of a problem.

I'm sorry you're both going through this.

Edited March 3, 2022 by HS Mom in NC

[kbutton]

9 hours ago, wathe said:

To be clear:  I don't think anyone is stating that CPR is always futile.  Of course it's not, or we wouldn't ever do it.  Witnessed arrest in a young, otherwise healthy person is the perfect circumstance for CPR.   My team and I successfully resusced a person in their 50's with CPR literally just a few hours ago.  

But CPR in a dying elderly frail pt with metastatic Ca and a long list of other significant comorbidities (COPD, CAD, CHF, DM, CRF, advanced dementia .... - the list is long) whose family/POA insists on full resuscitation because "they aren't ready" to even talk about death, much less face it? That's futile.  And it happens every day.  That's what I think @Mrs Tiggywinkleis talking about.  She literally feels their ribs cracking, then crunching with every chest compression as she does CPR.  She know what the outcome will be.  It's always the same.  And she has no choice.

(@Mrs Tiggywinkle is free to tell me off for speaking on her behalf, but I think she will agree) 

I agree, but I do think that the general public has the idea that CPR is futile. I have heard it said a number of times by people who are educated and from whom I would not expect it. They don't just mean for old people. 

[catz]

40 minutes ago, kbutton said:

I agree, but I do think that the general public has the idea that CPR is futile. I have heard it said a number of times by people who are educated and from whom I would not expect it. They don't just mean for old people. 

That's interesting, I get the opposite feeling.  CPR for someone who crashes outside of a hospital setting is often not successful, especially for the elderly and infirm.  Even when successful, often leads to permanent brain damage.  And I am not saying we should drop CPR at all.  There are certain situations it works better than others.   But I certainly think should be thoughtfully discussed for the elderly and criitically ill.  Our medical system does an awful job with end of life.  ETA - and as an aside, my father who had serious heart disease and far outlived expecations with a great quality of life was rescuitated and lived his last 5 days on life support in an ICU.  The nurses gave us straight up info that we were assembling to say goodbye and his odds of waking up were very low.  My mother definitely had false expecations and they had DNR's, etc in place.  

The overall rate of survival that leads to hospital discharge for someone who experiences cardiac arrest is about 10.6 percent, the study authors note. But most participants in the study estimated it at more than 75 percent.

“The majority of patients and non-medical personnel have very unrealistic expectations about the success of CPR as well as the quality of life after patients are revived,” said lead author Lindsey Ouellette, a research assistant at Michigan State University’s College of Human Medicine in Grand Rapids.

https://www.reuters.com/article/us-health-cpr-expectations/cpr-survival-rates-are-lower-than-most-people-think-idUSKCN1G72SW

Edited March 3, 2022 by catz

[Frances]

3 hours ago, skimomma said:

I'm not seeing that at all.  Trying to understand the ethics of prolonged life versus prolonged suffering is not "throwing people out." 

Exactly. I have an aunt through marriage who did everything right. She was a nun for the first part of her adult life which has been linked to very good health outcomes, including decreased risks of dementia. She was always very active and fit and at an ideal weight. She ate a very healthy vegan diet with much of what she consumed raised in large gardens and either eaten fresh or canned. She had a large and varied social circle and volunteered regularly. As far as I know, she had no health problems and has never been hospitalized. She always exuded health and vibrancy.

She’s now in her early 70s and for the last few years since her husband passed she has been in a locked dementia facility because she has escaped too many times from less restrictive environments. They had no children. Fortunately, despite their early vows of poverty (he was a priest before they married), he managed their later finances very well and there is a couple of million available for her care. 

I will say that seeing the one person out of my entire extended family who seemed to do everything right to stay healthy both physically and mentally end up with dementia at a relatively young age has been very, very sobering.

[Laura Corin]

4 minutes ago, Frances said:

 

I will say that seeing the one person out of my entire extended family who seemed to do everything right to stay healthy both physically and mentally end up with dementia at a relatively young age has been very, very sobering.

Yes. Husband and I have been having serious discussions about the balance between living frugally for the long term and living in the moment.

My brother - slim, muscular, good diet, cyclist, local tennis champion - has had a series of completely unavoidable health crises in the past five years.

[freesia]

1 hour ago, Frances said:

Exactly. I have an aunt through marriage who did everything right. She was a nun for the first part of her adult life which has been linked to very good health outcomes, including decreased risks of dementia. She was always very active and fit and at an ideal weight. She ate a very healthy vegan diet with much of what she consumed raised in large gardens and either eaten fresh or canned. She had a large and varied social circle and volunteered regularly. As far as I know, she had no health problems and has never been hospitalized. She always exuded health and vibrancy.

She’s now in her early 70s and for the last few years since her husband passed she has been in a locked dementia facility because she has escaped too many times from less restrictive environments. They had no children. Fortunately, despite their early vows of poverty (he was a priest before they married), he managed their later finances very well and there is a couple of million available for her care. 

I will say that seeing the one person out of my entire extended family who seemed to do everything right to stay healthy both physically and mentally end up with dementia at a relatively young age has been very, very sobering.

In our family, dh's dad was the grandparent who did everything right--the man even put sunflower seeds on ice cream to make it healthier.  He died of Hotchkin's Lymphoma at 60.  My dad-diabetic, overweight, drinker, smoker for most of his life--passed at 77.  It makes no sense sometimes.

[Laura Corin]

29 minutes ago, freesia said:

In our family, dh's dad was the grandparent who did everything right--the man even put sunflower seeds on ice cream to make it healthier.  He died of Hotchkin's Lymphoma at 60.  My dad-diabetic, overweight, drinker, smoker for most of his life--passed at 77.  It makes no sense sometimes.

Yes. My eldest brother, who doesn't look after himself at all, has various ailments but nothing serious.  My second very fit brother got deep vein thrombosis after a long drive, a series of heart attacks caused by his coronary arteries spontaneously shredding, then Covid probably caught outdoors, and now Covid-related liver damage.

[Frances]

4 hours ago, freesia said:

In our family, dh's dad was the grandparent who did everything right--the man even put sunflower seeds on ice cream to make it healthier.  He died of Hotchkin's Lymphoma at 60.  My dad-diabetic, overweight, drinker, smoker for most of his life--passed at 77.  It makes no sense sometimes.

Exactly. So far for my parents and my ILs, they have passed in reverse health order. My FIL first at 63 from skin cancer, perfectly healthy before that. My dad next at 78 from CCL. When he had his spleen removed at one point during an acute crisis, every single medical person who came into his room commented on how fit he was. Almost right up until he died he was still cutting all of the wood to heat their home. If it holds, last to go will be my 84 year old mom who has multiple serious lifelong health issues with more added all of the time. She didn’t even go to school until fourth grade due to congenital health problems.

And the real tough one for my SIL who was very close to my dad was her dad who was morbidly obese (like the type who they do TV shows about), diabetic, congestive heart failure, kidney disease, alcoholic, smoker, etc. who lived into his 80s, all the while tormenting his saintly wife who cared for him to the very end.

Edited March 4, 2022 by Frances

[Jean in Newcastle]

Nobody is saying that we can have immortality or can even guarantee a long disease free life. But there are certain lifestyle choices that can improve our overall quality of life (for the most part but not with  100% guarantees). And there are many people who do have somewhat predictable diseases /problems due to their lifestyle choices. I am one of those people and I am trying to choose differently. 
 

I think that things like dementia are especially difficult to deal with because we start to lose the person we love - their personality, mentality- before their body goes. I don’t know as much about what lifestyle choices (if any) can help protect you from that. 

[fairfarmhand]

Yeah, here;s irony.

Out of my dh and my parents, the four of them. My mom was probably the healthiest. Ate lots of veggies, enjoyed walking and exercise. Kept her weight under control. Brain cancer. Died at age 52 after a 12 yr battle.

The next healthiest person was my FIL. Somewhat overweight but did eat some veggies and liked working outside. While he never exercised intentionally, he did go for walks and garden. He was a surveyor for many years so had a healthy active youth. Died next at age 62.

MIL--quite overweight but did enjoy vegetables.  Didn't exercise. Died of COVID at age 67. 

Then we come to my dad. Who stays fairly active but never intentionally exercises. Despises veggies and never eats them. Eats meat and potatoes. And sweets.

And he's still around. 

So strange how that works. I still take care of myself, not because it's a guarantee of long life, but because I want the life that I do have to feel good. I want to be able to move around and enjoy things.

[mjbucks1]

This is so interesting that you bring this up.  My grandmother was born in 1905 and passed away when she was 96 in 2002 (I was in my 30's then).  She often talked about her or her mom going and caring for people who were sick.  About 2 months ago I found a tape recording of my grandmother talking about various things she experienced throughout her life.  One thing she said was that when someone needed care, the entire community would pitch in.  If an older man was ill, the men of the community would take one night a week and stay with the ailing man.  She really talked about how the entire community would help.  Of course there were not the number of doctor's appointments, etc. 

[Ellie]

On 3/1/2022 at 2:54 PM, GracieJane said:

Several people in my life are taking care of aging parents (in their 90s). In one case, the estate pays $17,000 per month for 24/7 caretakers. In the other cases, a child (usually daughter) does the caretaking. Universally it seems to be really hard. There are a lot of doctors visits and tests.

It’s really striking to me how many designated caretakers each elderly person needs. Generally at least one assigned adult, which is more than most children need. Which makes me wonder: what did people used to do historically? I’m assuming nobody had the money to pay for 24 hour caregivers, but did they have adults to watch a parent with Alzheimer’s? Or wash and groom them? Was it servants? 

I’m curious if anyone knows how this worked even 100 years ago.

 

People stayed home. Other family members took care of them (usually multiple family members, because the four-person nuclear family that is more common today hadn't happened yet for most communities). The elder, unwell people didn't live as long.

[Frances]

5 hours ago, Jean in Newcastle said:

Nobody is saying that we can have immortality or can even guarantee a long disease free life. But there are certain lifestyle choices that can improve our overall quality of life (for the most part but not with  100% guarantees). And there are many people who do have somewhat predictable diseases /problems due to their lifestyle choices. I am one of those people and I am trying to choose differently. 
 

I think that things like dementia are especially difficult to deal with because we start to lose the person we love - their personality, mentality- before their body goes. I don’t know as much about what lifestyle choices (if any) can help protect you from that. 

Completely agree. But I also don’t think if either me or my spouse are one of the unlucky ones who get dementia or have a serious stroke despite our healthy lifestyles, that there’s anything wrong with saying no to anything that will prolong our lives.

Edited March 4, 2022 by Frances

[Jean in Newcastle]

54 minutes ago, Frances said:

Completely agree. But I also don’t think if either me or my spouse are one of the unlucky ones who get dementia or have a serious stroke despite our healthy lifestyles, that there’s anything wrong with saying no to anything that will prolong our lives.

I don’t either. Which is why I am pro advanced directives  etc. But I do think the idea that people should stop having routine medical care after age 60 (not brought up by you) is extremely short sighted. For one thing, that routine medical care can (in many cases, not all) lessen the chance of having something like a serious stroke. 

[Frances]

1 minute ago, Jean in Newcastle said:

I don’t either. Which is why I am pro advanced directives  etc. But I do think the idea that people should stop having routine medical care after age 60 (not brought up by you) is extremely short sighted. For one thing, that routine medical care can (in many cases, not all) lessen the chance of having something like a serious stroke. 

Age 60 is not what I would choose either. My mom chose 80, so no more mammograms, annual exams, colonoscopies, etc. But she still sees specialists for her specific ailments in order to maintain as much quality of life and mobility as possible.

[Familia]

On 3/2/2022 at 9:44 AM, Mrs Tiggywinkle said:

And I can’t tell you how many people sign DNRs and when they pass at home, the family calls 911 and demands everything done.  Doctors(not all, but many) dance around the death conversation. They don’t explain to families and patients that most of the time CPR and all it entails is violent and futile.  Doctors don’t want to have end of life discussions and don’t want to suggest anything less than aggressive treatment, because so often they get such pushback by the families and even the patient

Also—remember that the primary care doctors are usually not the ones who see the end of life decline and issues.  When it gets really bad, that’s the ER doctors, ICU doctors, hospitalists and nursing home or home care providers.   PCPs aren’t involved when things get really bad.

Yes, I had an elderly family situation in ICU. Once the doctors determined that death was inevitable, I wanted to know the immediate options from the nurses. I told them not to intubate, which they were ready to do. When I asked them to discuss the situation with me, what would happen next, what options were in the next steps, they treated me really funny. I wanted the family member comfortable and to die as peacefully in the situation as possible. It was so frustrating that they just were so tight lipped and unhelpful. A few nurses told me that they see families get really contentious between themselves during this stage. We didn’t have that, I said. If how I am wording this sounds unclear, it is because, even today, I cannot make sense of the progression of miscommunication that was happening. I am an information seeker and just wanted clear direction. Until the hospice care took over an hour or two later (stayed in hospital with hospice care in charge for a day until peaceful death), I felt so confused and alone. The nurses just ignored my direct questions. I kept really upbeat and kind sounding (as much as I could in the situation), thinking ‘is it just me?’, ‘If I ask what happens next in a different way, will they answer me?’ ‘If I tell them that we are quite open to the inevitableness of the situation will that help?’ I wasn’t even told that hospice was taking over until shortly before they showed up. All this to say, that I agree with you, Mrs. Tiggywinkle, I do think healthcare workers don’t want to have end of life discussions - in our situation it made it feel like I was in the Twilight zone…it made it so painful for me to not have anyone to discuss it all with as it was happening. The hospice workers were awesome, though.