End of life issues....an ICU nurse looks at intensive care......trigger warning

[Farrar]

I don't believe that most ICU nurses actually assist families in making end of life decisions.  Rather, it is hospital social workers, hospice personnel, and others who are skilled in discussing these nuanced issues with families and patients.  My husband is one of those people.  He works very hard at providing good information that is compassionate as well as accurate and in helping families when they might be stuck in the decision making process. 

 

Also - not all old people are pumped full of drugs or have low quality of life.  I don't think that people meant to say that, but some generalizations are being made. 

 

I agree that these decisions need to be made by individuals and their families. 

 

I think this varies so much by facility. One of the things I observed with my father's care is that palliative care and social workers to help with these decisions were absolutely there, they were available, the palliative care teams were busy and working hard all over the hospital, the social workers were there. BUT... no one ever suggested that he ask for a palliative care consult or bring in a social worker or talk to hospice. My mother and I had to push step-mom to ask for palliative care to come in. She didn't know the word palliative care, I don't think. She didn't know to ask for that support. But without asking for it, the hospital wasn't going to provide it. And, of course, once they were there, it was great. They were helpful. For the scant few days they were there. Because by the time they came in and the social workers stepped in, it was really too late to really help him make any real quality of life improvements and it was too late to do any big picture thinking about what decisions he wanted for his end of life care. They should have been called in much, much earlier. But in the hospital system thinking - and this was a prestigious, well-known, well ranked institution - it wasn't about advocating for helping them make those decisions or have that way of thinking. Everyone was just "doing their jobs." And, sure, they did them fine. But doing their jobs meant just keeping him alive at all costs and never pausing for those conversations. After all, it wasn't their jobs.

 

On the other hand, when my step-father was sick, my mother worked in that field so she knew from the get go what services to ask for, what professional support to call in.

 

They had the same disease. Of course, there are *so* many factors at play. And I think there's no way my father could have lasted anywhere near this long because he had other issues. But he died within three months of diagnosis. My step-father lived for several years, including almost two years on hospice. People having those conversations and focusing on quality of life care is so incredibly important. 

[PrincessMommy]

Another good book on the subject is "How We Die" by Nuland.   It's from a doctor's perspective.

[Angie in VA]

Following up on the article, I highly recommend this book. Whether you have aging parents or need to think about your own end of life issues, it will help you consider how to make choices.

 

Being Mortal: Medicine and What Matters in the End

 

 

Thank you for posting. I just bought 3 hardback books to take to a book signing, so I can't get this now, but I hope to read it. Maybe our library has it. 

[PrincessMommy]

The article says that she works at a teaching hospital.  That speaks volumes.  If I'm ever near the end it's the last place I would want to be taken. 

[Jean in Newcastle]

Wait a sec, isn't this thread about End of Life issues? I don't think anyone has said end of life should be equated with age. Big difference.

But in cases of age discrimination, the elderly can be denied services because they are at the end of their life. And that can hasten the true end of their life. Or make their remaining time miserable.

[Tammi K]

I just watched Extremis last night. It's a short look at end-of-life in an ICU unit and families' different approaches.  I found it on Netflix.  It was interesting and sensitively done.

[Ottakee]

I just watched Extremis last night. It's a short look at end-of-life in an ICU unit and families' different approaches. I found it on Netflix. It was interesting and sensitively done.

Thanks for mentioning this. I just watched it and thought it was well done. The struggles the doctors face are very real and I thought that was well protrayed as well. I know my friends in the medical field struggle with these issues daily.

[FaithManor]

Going through this with my DNA donor at the moment. He has end stage cancer and they have propped him up for a year. A year of killing us to care for him, a year of care takers being verbally abused constantly, a year of medical bills they can't pay, a year causing my mom to wish she were now dead just to have it over with.

 

Sometimes the living ought to be taken into consideration and not just the nearly dead. And he keeps demanding ridiculous intervention so he can live on to continue to abuse people.

 

They have the right to demand to be taken of at home and by their next of kin, regardless of what this does to you. Oh yes, they can press charges with the county prosecutor for elderly neglect ask us how we know! And I have not yet met a single medical professional or social worker who gives a damn about the family. Not.a.single.one.

 

I will walk into the woods and die of dehydration before I will ever put my family through this!

Edited March 5, 2017 by FaithManor

[Seasider]

(((Faith)))

[Annie G]

I think this is so important to discuss.  My father collapsed suddenly, spent 5 days in ICU, and died after removal of life support in 2015.   He had a long term heart condition for 18 years with excellent quality of life - hiking and golfing within days of his death.  I wished every day he was in ICU that his heart would just stop.  Without paddles within seconds of no heartbeat, your brain is dying.  There was a 5 day protocol to declare him brain dead.  Chance of survival in cases like this is absolutely tiny but yet they do it anyway.  He had tons of advance directives and DNRs. 

 

 

 

Pretty much how my mom passed.  But prior to that (as in the 20 years before she passed) she had a couple of heart attacks and some other illnesses that were treated at the hospital and she returned home to her active life. We had no idea this would be different...she had trouble breathing (only one lung due to cancer so that was an ordinary issue) and she went to the hospital, where things turned very bad within an hour. 

I am so proud that we did what we could for her but as soon as it became clear she wasn't going to bounce back, we followed her wishes and removed life support. My whole life I recall her telling us she didn't want to live as a vegetable (her words) and when we had to face that decision, we did it. 

 

DH's mom has terminal cancer and late stage dementia. And yet last month his sister and his dad scheduled cyberknife treatment and didn't tell her until the day treatment started. I think that is so disrespectful. She has repeatedly told us she just wants to let her life end without heroic efforts but they are determined to do everything. It breaks my heart. 

[Reefgazer]

We just went through something similar with my dad last spring/summer when he got sick and died, although his situation wasn't as extreme as the ones in this news article because we as a family eventually decided to put him on a DNR, and so he didn't linger or suffer for too long.  So anyway, my thoughts on this are fairly fresh. 

 

I respect doctors and medical staff; they are professionals whose opinions and advice needs to be carefully considered.  However, I do not think their advice should be taken blindly or without careful thought on the part of the family because they are not God and they do not know your family member like the family does  This is especially true with the hospitalist model of care that is so popular now (and when it comes to this model, I use the word "care" very loosely here); doctors do not even get a chance to know a patient in a short-term way, let alone really know them long term.  With my dad, we knew what was "normal" behavior for him, even if the doctor didn't, and many things that caused a doc to look askance at my dad were perfectly within normal behavior for him.  I can think of more than one instance last summer when dad did or said some off-the-wall thing that made zero sense to the doctor, but made perfect sense to us.  For example, I had my dad outside in a wheelchair on the rehabilitation center grounds that was not far from where her grew up.  We were talking about how those grounds were pasture only a generation ago, and that dad had ridden horses on that very property.  So when we got back inside, dad related how he had once ridden horses "through these halls".  The staff looked at me and smiled, thinking dad was off the chain, until I explained that this had been pasture where he had ridden and trained horses as a young man.  Stuff like this happened several times, leading the medical staff to believe dad's mental capacity was far worse than it really was and coloring their judgment of his mental capacity and quality of life.  In another instance, a doctor told me a lung x-ray showed dad had lung cancer.  Since a lung x-ray had shown lung cancer 5 years prior but a biopsy was negative, I asked what on the x-ray indicated cancer, and the doc explained what he saw but qualified it with "we can't give a written diagnosis without a biopsy, but it is surely cancer".  So I asked for a biopsy, pretty sure that it was not cancer, and it wasn't.  But the doctor seemed annoyed that I asked for the biopsy and would not make any decisions before the biopsy was back.  It was negative, by the way.  Anyway, when the docs recommended comfort care only for dad, our family accepted that this was probably going to be the proper course of action for him, but we did not want to do that immediately because we wanted to make sure we were making the best choice and giving dad every possible option and chance to get better.  We finally made the decision for comfort care only when we were conviced that we have exhausted all reasonable options for him, but that decision didn't come as fast as doctors recommended.  However, I now rest comfortably knowing we walked that fine line between giving dad every chance we could to get better but not crossing into the line of torturing him.  That line can be difficult to determine, and families have to live with their decision for the rest of their lives.  If medical professionals didn't insist on drugging elderly patients to the point of catatonia (because when a patient is that drugged, you really cannot make an informed judgment on a their capacity and health),, and if the medical model was one where a doctor actually knew who the patient was as a result of a long-term relationship, then it would be a bit easier to completely trust a doctor's judgment.

[Reefgazer]

The bolded exactly.  It's really not always so clear-cut.

Background: my father died last year. He had cancer. He was in ICU for a few days, then hospice (just another room in the same hospital).  They removed his breathing apparatus, and he died about 12 hours later.

 

I don't think this article is fair or helpful.

 

Like this quote: "Patients obviously can’t eat, so they will have had a feeding tube pushed up their nose or through their mouth and their esophagus, down into their stomach. This often takes a few tries, requiring us to pull up the bloody tube, re-lube it and push it back in at a different angle."   And then the bit about diarrhea that develops.    So...... is the argument that feeding tubes should not be allowed near end of life, I guess? But how do you know it's end of life?

 

When my dad went into the ICU it was one of a dozen trips.  We had some really good times between those trips. I read this article and it sounds like a litany of indignities-- yes-- but also just hopeless and grim. 
I guess its' to show the diary of an upset nurse. I don't envy those people their jobs, at all.  But I definitely don't feel like I learned anything or am better off having read this.

 

[Reefgazer]

I *think* what this means is that the next of kin feels pressured to accept the doctor's recommendations, despite what they know their loved one wants, and despite the fact they have a legal right to make the choice.  I think this is especially true of the older WWII generation that was not in the habit of questioning their doctor's judgment.  I have been pressured greatly by docs in a few circumstances and it was tough for me to say "no" to a procedure, especially after my doc brought in successively higher-ranking docs to pressure me into agreeing with their decision.  I am bold and stubborn and not easily swayed, but even I had trouble resisting that kind of pressure.  I skirt out on many doc screenings/appointments to this day because of the pressure I took from docs in the past.

I did not understand this passage:

 

Why is it not the patient's or her next of kin's right to decide the treatment plan? How can the doctor say the patient needed to complete whatever course of treatment?

 

[Reefgazer]

This is very true.  It is so hard to lay down what you want in the future because so many situations do not present themselves in a perfectly textbook way.  I've just chosen to have my DH use his best judgment because this is who I trust to make good decisions on my behalf.

OTOH, it can be very difficult to make the living will in enough detail to allow the spouse not to have to make any decisions, since it is not feasible to forsee all conditions and possibilities.

For this reason, I have chosen not to stipulate what extent of life saving measures I want, since I cannot predict the prognosis after the event that renders me unable to give my opinion - be it a car accident or a terminal disease. Being resuscitated after an accident in my 50s may restore me to full health; being resuscitated in cancer surgery at age 80 may just prolong suffering.

I have given power of attorney to my husband to make medical decisions for me. We also have ongoing conversations about the quality of life that we find acceptable, and so I trust that he will interpret my wishes in the context of the situation and decide in my best interest. I cannot be certain that this will lead to the "right" choice, but since we have no crystal ball, I feel that is the best I can do.

 

[Pawz4me]

I wonder if, when thinking about end of life issues, most people don't envision an elderly person ravaged by cancer, debilitated by a stroke or near the end after years of decline due to dementia? I know I always used to, when my mom talked about what she wanted or didn't want. I always thought it would be easy to know when to say "no more." I thought that when/if we got into that situation it would be obvious. But real life has a way of not being so cut and dried. It's a LOT harder to make decisions for someone injured in an auto accident--an accident that would have done no more than bruised a younger, less frail person. And it was easy(?) to say 'okay, let's go ahead and try that" and then another thing. Especially when the doctors are pushing hard to try things. Because really--it was a relatively minor accident. How can you NOT give someone a chance to recover?

 

Making these decisions in reality is not always as easy as that article implies.

[Joules]

I wonder if, when thinking about end of life issues, most people don't envision an elderly person ravaged by cancer, debilitated by a stroke or near the end after years of decline due to dementia? I know I always used to, when my mom talked about what she wanted or didn't want. I always thought it would be easy to know when to say "no more." I thought that when/if we got into that situation it would be obvious. But real life has a way of not being so cut and dried. It's a LOT harder to make decisions for someone injured in an auto accident--an accident that would have done no more than bruised a younger, less frail person. And it was easy(?) to say 'okay, let's go ahead and try that" and then another thing. Especially when the doctors are pushing hard to try things. Because really--it was a relatively minor accident. How can you NOT give someone a chance to recover?

 

Making these decisions in reality is not always as easy as that article implies.

 

I totally agree.  Having been through it all caring for my mom, I can say, "Hindsight is 20/20."  I know now exactly what we should and shouldn't have done, but it's not easy to know in the moment.  Some things were true quality of life issues...if the treatment had worked, what was left of her life would have been more comfortable.  When it didn't, it was a waste of her energy and her time, and in essence, made things worse, but all you have is "odds," no crystal ball.

[eternalsummer]

Cost is the elephant in the room.

[Laura Corin]

Cost is the elephant in the room.

 

Yes.  And my mum is very aware of this.  She doesn't think it's (financially) worth extending her life at this point.  She would rather that NHS money be spent on young people.  She's very hard-headed about the money that has been spent by taxpayers on her health in the past and that it is time for it to be used on others.

[Carrie12345]

My grandmother was just diagnosed with probable cancer, and she has dementia.  All relatives involved have agreed that trying to put her through treatment wouldn't be fair, and she probably wouldn't even put up with it.  They did attempt a scan to get more information, but she panicked.  Nobody wants to put her under at her age and in her condition for a test that isn't likely to change the plan.

 

I'm so grateful that my parents, aunts, and uncles seem to be on the same page.  Of course, over a decade ago, they went through all of this with my grandfather, who was in better health and didn't have dementia, so they have experience with the really rough parts when the odds were much better.

 

I need to update my own details.

[Guest]

Cost is the elephant in the room.

The opinion on cost may well vary by person. Some want a return of the money they paid in payroll taxes for Medicare their entire working life. If that means a heart valve at 96, or nursing home care, that will extend life six months,they view that as a good use of their money.

 

Also, costs seem to have no relation to services, but a huge relationship to profit desired. What if pharmacy costs went down to a small percent over cost of development and production, and what if the supply of doctors increased?

[Guest]

Yes. And my mum is very aware of this. She doesn't think it's (financially) worth extending her life at this point. She would rather that NHS money be spent on young people. She's very hard-headed about the money that has been spent by taxpayers on her health in the past and that it is time for it to be used on others.

This is my mom, too. She's 94 and healthy.

 

One of the things that has not been mentioned (I think) is that one's attitude toward death changes over time. It is hard for the young to understand that some people are OK with understanding that it's time to go. They're not suicidal. They're just...done. They're not sorry they are alive but thy're ok with being done, too. Life can be wearying.

 

Thing is, it is young people who are making so many decisions and giving advice.

 

And sometimes the change in understanding is not toward the acceptance end if the spectrum, but toward the terror end, sometimes about death itself and sometimes about the dying process.

 

My dad wasn't afraid to die...he was done...but he was terrorized by the thought of pain. This from a man who had ENDLESS dental work done without Novocaine, who had two sick days in his entire career (not that he wasn't sick). The meds to relieve pain gave him a graceful end.

 

And it is not cut and dried.

 

Cost does have an impact. In my family, to extend a member's life span but not heal the sickness that would take the person would have beggared the family. That counts in the decision.

[eternalsummer]

This is my mom, too. She's 94 and healthy.

 

One of the things that has not been mentioned (I think) is that one's attitude toward death changes over time. It is hard for the young to understand that some people are OK with understanding that it's time to go. They're not suicidal. They're just...done. They're not sorry they are alive but thy're ok with being done, too. Life can be wearying.

 

Thing is, it is young people who are making so many decisions and giving advice.

 

And sometimes the change in understanding is not toward the acceptance end if the spectrum, but toward the terror end, sometimes about death itself and sometimes about the dying process.

 

My dad wasn't afraid to die...he was done...but he was terrorized by the thought of pain. This from a man who had ENDLESS dental work done without Novocaine, who had two sick days in his entire career (not that he wasn't sick). The meds to relieve pain gave him a graceful end.

 

And it is not cut and dried.

 

Cost does have an impact. In my family, to extend a member's life span but not heal the sickness that would take the person would have beggared the family. That counts in the decision.

 

 

And in general, to do this as a national policy or societal practice beggars the future generations of the society.

[MysteryJen]

After my experiences with my dad, I have thought a lot about this. My dad was in probably the middle stages of dementia though not diagnosed yet when he was found to need quadruple bypass surgery. In the hospital, in those few days, he was diagnosed with dementia. While there, he told us repeatedly that he was ready to go and did not want to have the surgery. But the doctors and my mother ignored his wishes, because he had dementia. I argued that if he did have dementia (much further along than my mother would admit) he shouldn't have the surgery because it would most likely hasten his mental decline while keeping him alive. I was overridden by my mom and the cardiologist who told her that he might get better with more oxygen to his brain. A nurse tried to explain that major surgery was not a good idea and my mom filed an official complaint against her.

He almost died on the table and yes, the extremely expensive surgery, that taxpayers paid for, extended his life so he and we could experience the joys of my dad forgetting everyone, taking a swing at my son because he was a stranger walking into his house, putting him in a memory care center, and moving him to a locked dementia ward where he fell twice in two days and died. I would have given anything to not have had that exerience. It has taken years to move past those horrors to remember him as a good and kind man, not the raving, violent, incoherent person he became. 

And the poor, selfish decision-making of my mother wrecked what was left of the family. It has taken a long time to let go of the anger and I am still not over it, nor are my siblings. 

I will not inflict this on my children. Ever. 

[Jean in Newcastle]

My dad worked until he was 90 years old.  He was not a drain on society.  And I hardlly begrudge him the two years from 90 to 92 when he was having health problems and did need care.  I think that stopping work at 90 was one thing that led to his decline and death two years later, but he also stopped at 90 because he was finally starting to have health problems so there is a circle there. 

 

I'm glad that my nephew with Down's syndrome was allowed a heart transplant in his twenties and was not deemed a drain on society not worthy of health services and resources.  He has lived with that heart for over ten years now and is a blessing to many people. 

[eternalsummer]

The question is not whether some people are a drain on society as old people or as young permanently disabled people or whatever.  Of course everyone has value, and life itself has value, and etc.

 

The question is what to do with limited finances.  Money that is spent on complicated, expensive treatment at the end of life *cannot* be spent on other things.  Eventually, with aging unhealthy boomers and medical advances, health care costs will eat the national budget alive. 

 

Furthermore, a lot of money is spent on care that really could be done at home (though it would be a hardship for the at home carers); it's a choice we've made as a society, but a costly one.

[Laura Corin]

No post

 

Edited March 5, 2017 by Laura Corin

[Catwoman]

The question is not whether some people are a drain on society as old people or as young permanently disabled people or whatever. Of course everyone has value, and life itself has value, and etc.

 

The question is what to do with limited finances. Money that is spent on complicated, expensive treatment at the end of life *cannot* be spent on other things. Eventually, with aging unhealthy boomers and medical advances, health care costs will eat the national budget alive.

 

Furthermore, a lot of money is spent on care that really could be done at home (though it would be a hardship for the at home carers); it's a choice we've made as a society, but a costly one.

While the bolded may be true, when it's your own life or the life of your close family member who doesn't want to die simply because we've reached a certain age, the cost to society will probably seem secondary compared to saving or extending that life.

[MysteryJen]

I know many vibrant healty elderly people and I have seen the sort of age discrimination that goes along with old age, especially with my dmil. And it is also age discrimination and condescending behavior on the part of health care professionals when an older person says "I don't want that." Test, procedure, medication, whatever. They are presumed to not understand or be "difficult" patients. If I can refuse a test or postpone a lab, and the doctor shrugs and says okay, we will revisit it later, elderly people should get the same response. "Being done" or refusing yet another pill is normal and those choices should be respected.

 

 

[Reefgazer]

This is somewhat similar to the situation I was in with my dad last summer, minus the extreme behavior of my dad, or what you term selfishness on the part of family members (I do not actually believe it was selfishness that drove my mom to want more treatment for my dad than the rest of the family thought he should get).  Dad had Lewy body dementia, so his body failed (starved himself to death, basically, swallowing muscles shut down, legs weak and gait off), but his mind was not that far gone and we had some good laughs and good times talking and laughing and being goofy before he died.  I am so grateful I had that time with him, and don't regret one bit the treatments he received, although I am sure they only prolonged his life by a month or two.  He did have some signs of cognitive dementia, as well (started swearing - and I mean foul language), but nothing that made him terribly violent or unmanageable, and as long as the hospital was not allowed to drug him into a stupor (oh, they tried) he was able to participate in our family visits and understood his care plan. 

 

I do not believe my mom was selfish for wanting more treatment for my dad; she is the most unselfish person I know, and  because dad didn't have overwhelming cognitive problems, It was hard for us to know when treatment should end; that is especially true when the hospital pushes narcotics, psychiatric medications, and sedatives that alter behavior, even though the patient is not in pain and the family requests that they be given none of these types of medication.  So if families are hesitant to withhold treatment, medical professionals often bear some responsibility for this because of their drug-pushing, which makes it harder for families to really "see' what is going on with the patient and evaluate their true condition.  I don't blame my mother for wanting more treatment for my dad; she loved him and wanted what was best for him, even though that was sometimes hard to determine.

After my experiences with my dad, I have thought a lot about this. My dad was in probably the middle stages of dementia though not diagnosed yet when he was found to need quadruple bypass surgery. In the hospital, in those few days, he was diagnosed with dementia. While there, he told us repeatedly that he was ready to go and did not want to have the surgery. But the doctors and my mother ignored his wishes, because he had dementia. I argued that if he did have dementia (much further along than my mother would admit) he shouldn't have the surgery because it would most likely hasten his mental decline while keeping him alive. I was overridden by my mom and the cardiologist who told her that he might get better with more oxygen to his brain. A nurse tried to explain that major surgery was not a good idea and my mom filed an official complaint against her.

He almost died on the table and yes, the extremely expensive surgery, that taxpayers paid for, extended his life so he and we could experience the joys of my dad forgetting everyone, taking a swing at my son because he was a stranger walking into his house, putting him in a memory care center, and moving him to a locked dementia ward where he fell twice in two days and died. I would have given anything to not have had that exerience. It has taken years to move past those horrors to remember him as a good and kind man, not the raving, violent, incoherent person he became. 

And the poor, selfish decision-making of my mother wrecked what was left of the family. It has taken a long time to let go of the anger and I am still not over it, nor are my siblings. 

I will not inflict this on my children. Ever. 

 

[Reefgazer]

Don't overlook the care necessary to fix problems brought on by the hospital/hospitalization itself.  My dad spent a few days in the ICU after the administration of Seroquel turned him into a blithering idiot, which was administered after we specifically demanded he not be given any psychiatric medication.  It took him a full month and a lot of expensive care before he was restored to a somewhat original version of himself, and even then, he wasn't entirely himself.  He needed a lot of additional care after that medication episode, because of course, the only response to my dad's medication reaction was to pump him full of more drugs, which worsened the situation to the point of needing an ICU.  If the doctors had listened our family and understood his history (they didn't, mainly because of the hospitalist model of care), he would not have received this drug and a lot of expensive care could have been avoided.  I don't think for one second that my dad is an exception to what goes on in these hospitals.  So these hospitals and doctors bring on a lot of this crap on themselves.  This is an extremely sore spot for me. 

 

https://www.theatlantic.com/magazine/archive/2013/12/the-home-remedy-for-old-age/354680/

 

http://www.cnn.com/2016/08/15/health/elderly-hospital-patients/

The question is not whether some people are a drain on society as old people or as young permanently disabled people or whatever.  Of course everyone has value, and life itself has value, and etc.

 

The question is what to do with limited finances.  Money that is spent on complicated, expensive treatment at the end of life *cannot* be spent on other things.  Eventually, with aging unhealthy boomers and medical advances, health care costs will eat the national budget alive. 

 

Furthermore, a lot of money is spent on care that really could be done at home (though it would be a hardship for the at home carers); it's a choice we've made as a society, but a costly one.

 

Edited March 5, 2017 by reefgazer

[Reefgazer]

I think you are right about this.  And patients/families who choose to refuse care/medications have them forced on them anyway.  This is what happened to my dad, which resulted in an ICU stay and additional necessary care in an attempt to restore him to his original condition after docs didn't listen to us. 

I know many vibrant healty elderly people and I have seen the sort of age discrimination that goes along with old age, especially with my dmil. And it is also age discrimination and condescending behavior on the part of health care professionals when an older person says "I don't want that." Test, procedure, medication, whatever. They are presumed to not understand or be "difficult" patients. If I can refuse a test or postpone a lab, and the doctor shrugs and says okay, we will revisit it later, elderly people should get the same response. "Being done" or refusing yet another pill is normal and those choices should be respected.

 

[FaithManor]

 

The question is what to do with limited finances. Money that is spent on complicated, expensive treatment at the end of life *cannot* be spent on other things. Eventually, with aging unhealthy boomers and medical advances, health care costs will eat the national budget alive.

 

Furthermore, a lot of money is spent on care that really could be done at home (though it would be a hardship for the at home carers); it's a choice we've made as a society, but a costly one.

Excuse me. DO NOT make a flippant comment about home care giving and society. Don't even go there!! The hell we face every damn day is staggering. It lead to my brother's stroke, my mom wishing she could die and just be done taking care of him, and new health issues for me, and I am still trying to finish my own child and then have to go back into the workforce to pay for college and get caught up on retirement savings because I will wind up having to financially support my mother who will be medically bankrupted too.

 

Forcing relatives who have to take care of their own families PLUS work full time is cruel. Damn dirty cruel.

[Guest]

Money that is spent on complicated, expensive treatment at the end of life *cannot* be spent on other things. Eventually, with aging unhealthy boomers and medical advances, health care costs will eat the national budget alive.

.

What source are you using for.these numbers and projections?

 

 

I can assure you that my condition is not curable, but even with the treatment I have had so far, the cost has not exceeded what I have been forced to contribute over my working life. If I had not had the treatment I prepaid via my own work, The money would have been spent on end of life care. I deserve that because I earned it. You wanting my money for somethng else That you deem more important is nice, but I cannot agree.

 

Eta for clarification, I don't mean end of life care in the future. I mean eol care app nine months later than my diagnosis date. so, instead of leaving two teenagers without a mom, I spent less than what I have contributed to give me five plus years of life. Now, I am expected to live at least five more years than originally expected and my original problem - discovered thanks to people who have the education to sort out complex issues - has a cure.

Edited March 5, 2017 by Heigh Ho

[TravelingChris]

I have been on multiple medications for quite a while.  I am doing fine.  If I am still doing fine at 80, I will still be taking multiple medications.  At this point, my dh knows that I do want to be revived.  I don't have dementia and I am not that old.  OTOH,  I can't understand the idea of medicating end-stage dementia patients unless it if for something that makes them feel better.  So asthma medications make someone feel better- having an asthma attack kill you is NOT a pleasant way to die.  High blood pressure, heart medications, anti-clotting medications don't make you feel better.  They help prevent death and I really don't see why we should work so hard to prevent death in end-stage dementia.  Notice= I am saying end- stage, not any stage of dementia.  Early stage dementia is a whole different animal and a person in that stage is aware of their surroundings usually, can enjoy life, etc.

 

I know and have met plenty of 80 and 90-year-old people who have their faculties and seem pretty healthy.  One friend of mine is mid-80's and just had an ambulatory spinal surgery to put something in her spine to prevent collapse and bad pain.  She recovered very quickly and is back to being her usual self.  In my view, better her get some care than some other people who are younger, don't care for their bodies at all and are leading destructive lives.

[SparklyUnicorn]

I worked in a nursing home.  I've seen all kinds of crap. 

 

I think it's pretty terrible the ridiculous lengths gone to sometimes.  Against the person's wishes.  But then I know of a couple of situations where care was discontinued due to lack of money.  Those two that I know of (family members) happened many years ago.  No clue if that still happens.  They did not want to discontinue treatment and had some quality of life left and were basically left to die due to money.  So I do worry about that aspect too because I know it has happened. 

 

For me?  Do not prolong my suffering or just keep me barely alive. 

[Seasider]

Excuse me. DO NOT make a flippant comment about home care giving and society. Don't even go there!! The hell we face every damn day is staggering. It lead to my brother's stroke, my mom wishing she could die and just be done taking care of him, and new health issues for me, and I am still trying to finish my own child and then have to go back into the workforce to pay for college and get caught up on retirement savings because I will wind up having to financially support my mother who will be medically bankrupted too.

 

Forcing relatives who have to take care of their own families PLUS work full time is cruel. Damn dirty cruel.

Particularly if the need for care resulted from a lifetime of willfully irresponsible choices.

 

Anyone who has not served as a full time caregiver to an adult that lacks cognitive function yet still has the ability to create emotionally and physically demanding situations, cannot fully comprehend what it's like to do it for a full 24 hour cycle, days, weeks, years on end. I'm not trying to shut down comments from anyone who hasn't done it, but suggest that if you haven't walked this road, or in tandem with someone who is doing it, you likely need a reality check. Things come up that you never could have imagined.

 

Home care is not cheaper. If you price private full time services equal to a nursing facility, it's way pricier. If you expect a family member to do it, you still need respite caregivers. Dementia patients don't keep normal schedules, and unless you never plan to leave the house and can groceries etc shipped to your door, you need sitters. You need to childproof the house to beyond the degree necessary for children. You have to figure out patient transport to medical visits. The caregiver sacrifices an income and more, as their own relationships drop off because they are no longer free to commit to any activity other than caring for the elder. Children of caregivers have their activities restricted because their parent is not free to transport them to games, practices etc. The caregivers' own physical and emotional health suffers to a degree that results in increased medical costs. I could go on and on...

[kbutton]

I have been on multiple medications for quite a while.  I am doing fine.  If I am still doing fine at 80, I will still be taking multiple medications.  At this point, my dh knows that I do want to be revived.  I don't have dementia and I am not that old.  OTOH,  I can't understand the idea of medicating end-stage dementia patients unless it if for something that makes them feel better.  So asthma medications make someone feel better- having an asthma attack kill you is NOT a pleasant way to die.  High blood pressure, heart medications, anti-clotting medications don't make you feel better.  They help prevent death and I really don't see why we should work so hard to prevent death in end-stage dementia.  Notice= I am saying end- stage, not any stage of dementia.  Early stage dementia is a whole different animal and a person in that stage is aware of their surroundings usually, can enjoy life, etc.

 

I know and have met plenty of 80 and 90-year-old people who have their faculties and seem pretty healthy.  One friend of mine is mid-80's and just had an ambulatory spinal surgery to put something in her spine to prevent collapse and bad pain.  She recovered very quickly and is back to being her usual self.  In my view, better her get some care than some other people who are younger, don't care for their bodies at all and are leading destructive lives.

 

Those are multi-purpose meds. Clotting meds are kind of gray--they might be given for someone whose heart valve was replaced long before they were "dying." Taking them away might not mean an easy, quick, or painless death either. 

 

Blood pressure and heart medications can absolutely be given to make someone feel better. You can live a long time with congestive heart failure due to not having your high blood pressure treated. Treating high blood pressure when someone has dementia is not likely to prolong life meaningfully.

 

***I wrote the next paragraph or two of this before realizing you said end-stage dementia, but it kind of speaks to things others have said, so I am leaving it.***

My grandmother had congestive heart failure for a long time before she died of rare, rare happening just before she turned 84. She did her best to avoid doctors, avoid meds, avoid it all, and what killed her in the end was something that kills almost everyone that experiences it (esophageal rupture). If she had taken meds earlier, she could have enjoyed the last decade more than she did. Meds wouldn't have prolonged her life, but they would've prolonged the quality of her life. I am not sure if her cause of death would have been prevented if she had been willing to receive care--it could be that she would've had a detectable problem that would've been treated and fixed, but I don't know for sure. Esophageal rupture that isn't from trauma is super rare, but sometimes it's secondary to a treatable problem.

 

The meds you are mentioning are also usually inexpensive. My 9 year old is on BP meds and will be for life. They cost about $3 per month. They are there to prevent us having to make a horrible decision should he have a life-threatening event that is not detected right away (these events are statistically less likely to be properly diagnosed and treated than most other emergencies). They are actually there to prevent us making the kinds of decisions discussed in this thread and/or his dying young from what has become much more preventable (when it's properly diagnosed). (Sorry to be vague about his condition.)

 

Anyway, just adding to the "not cut and dry" side of the argument.

 

I know many people do not have a choice about where they go for care, but if they do, it helps to be educated about local hospital reputations. Some hospitals here are known for their heart issues or elder care, for example. 

 

Oddly enough, our local hospital is one that I would feel comfortable dying in at this point, but not one I would be all that comfortable "living" in. Not to be terribly flippant, but I think that our hospital does an exceptional job of using social workers and other appropriate means to educate about dying while also being sure they don't over or under treat as much as they can humanly reckon.

 

Our SN neighbor (senior citizen but not "old") had a sudden death due to something relatively preventable. In her case, they think she was having symptoms that she didn't realize were bad (she was a person who didn't complain, but she did have the mental ability to speak up--I think she simply didn't realize the symptoms were her heart, and they weren't that bad). When she did realize something was amiss, she immediately went into crisis, but they thought she would respond to treatment. She did not, and they worked quickly to assess her survival status and remove life support appropriately. They supported family very, very well as she died.

 

I am not so sure I think their nursing is up to spec, so I wouldn't really want to be there if I planned to live. (Sad to say)

 

As for the original article, this nurse sounds burned out. I personally would not want her caring for me or a loved one. Maybe she should work in an entirely different part of medicine. Not everyone should work in ICU or other high burnout areas of medicine. 

[Jean in Newcastle]

I definitely think that there should be a lot of education on these matters. I've been really surprised to see how much some people just don't understand about what I think of as pretty basic health care stuff. I've also been really impressed at how patient my husband and others who counsel families on end of life issues are in explaining things.

 

One of the things that they have a hard time explaining is just how much doctors don't know. They don't know exactly how someone is going to respond to medications. They don't know how quickly an illness will progress. I could go on.

 

But getting professionals that you can trust can make a big difference. I take my ILs to their doctor who specializes in geriatrics and I am so impressed at how much she can tell from patients who can't tell her a lot directly. And I am impressed at how much she has their back. But of course not all doctors would fall in that category. And not all families follow the advice of even the good doctors.

 

 

Sent from my iPhone using Tapatalk

[Guest]

I worked in a nursing home.  I've seen all kinds of crap. 

 

I think it's pretty terrible the ridiculous lengths gone to sometimes.  Against the person's wishes.  But then I know of a couple of situations where care was discontinued due to lack of money.  Those two that I know of (family members) happened many years ago.  No clue if that still happens.  They did not want to discontinue treatment and had some quality of life left and were basically left to die due to money.  So I do worry about that aspect too because I know it has happened. 

 

For me?  Do not prolong my suffering or just keep me barely alive. 

 

You've hit on the reasons we really can't make any of this policy, that and MysteryJen upthread where she mentioned that a nurse who discouraged the heart surgery in this particular case ended up in hot water.  

 

The thing that we *can* do is to start having honest conversations with our loved ones, and even within ourselves, about the fact that we are going to die, and to have those conversations periodically...because things will change.  Eg.  My mom and dad decided in their 50s that they wanted to dispose of their bodies by Method A.  But in their 80s, Mom read an article that talked about how the children should have a say in the disposition of the body, that it has an impact on them, too, and so Mom talked to me and my sister about it, and we asked for Method C.  They met us halfway and chose Method B.  

 

I mentioned upthread that cost matters.  By that I do not mean that there should be some sort of National Policy Statement about how much we are going to spend on someone based on age or income or anything else.  But it is the elephant in the room, and it is a real elephant.   In the situation with our relative, the person's health was beyond repair, so it was *purely* about extending life, a painful life, and the annual cost of treatment was taking 20% of the couple's life savings.  What is the surviving spouse supposed to live on when that is gone for medicine that has done *nothing* to heal?  Is the survivor  supposed to go find a job at age 92?  

 

Another example:  My beloved 85yo aunt departed this life last May.   She was active and happy and in love with her dh.  She came home from golfing in Arizona, felt ill for a few days, went to the doctor, they rushed her to the hospital, ran tests, and found rampant leukemia. The doctors offered the opinion that she had a month to live, and pushed chemotherapy to extend her life.  She didn't want it but her daughters and dh persuaded her to give it a try.  So she did.  After three days of sheer hell, she asked the doctor how long would this chemotherapy go on.  Three weeks.  How much did it cost?  A lot.  She asked how long would it extend her life.  A WEEK.  She shut it off.  She said it was too much pain and too much money (insert response from everyone that it wasn't HER money--it was Medicare...  She said, "I don't care WHOSE money it is.  It's too much money for what I'd get.") and it was stupid to do this for three weeks so she could live one more week.  So her life ended about 6 days later, but she was comfortable, and not being tortured and spending a bunch of money for *that*.  She had to stand up to the medical community to get what she wanted, though.  

 

I'm not asking for solutions here...I'm saying this is the real world.  

 

My grandparents lived to  age 88, 86, 93 and 101.  My dad was 90, my mom is 94.  All of them were/are able to engage in the world, pretty much right up to the last few months of their lives (my dad was the least engaged for the longest).  That's an enormous blessing.   All but one met death with grace...and part of that, I think, is that they had come to terms with the fact that they were going to die.  They had lived a long time.  They had/have the hope of their faith in Christ.  The closer they got to death, the more at peace they became with it.  

 

A few years ago, Mom would call to chat and I'd get the usual update:  "Do you remember Jane Doe?"  "Yeah."  "She died."  It was like this every call.  One day I kind of lost it:  "This is so *depressing*--why are you always calling me to tell me someone died?"  Her response was a sort of telephone shoulder-shrug:  "It's the season we're in."  At the time, I was in the Mom of Young Children Season, and I couldn't understand her season.

 

I am thankful she had consistently taken time to address this in her own life, and to talk with us about their wishes, that she had taken time to get them in writing, and that she continued and still continues to talk with us about this stuff.  It seems to have been good for both of us.  

 

I have a feeling I'm a lot closer to this season of life than many who post here, which is why I am posting, to maybe share a little bit of how life looks when you get a little older.  

[Guest]

I have been on multiple medications for quite a while.  I am doing fine.  If I am still doing fine at 80, I will still be taking multiple medications.  At this point, my dh knows that I do want to be revived.  I don't have dementia and I am not that old.  OTOH,  I can't understand the idea of medicating end-stage dementia patients unless it if for something that makes them feel better.  So asthma medications make someone feel better- having an asthma attack kill you is NOT a pleasant way to die.  High blood pressure, heart medications, anti-clotting medications don't make you feel better.  They help prevent death and I really don't see why we should work so hard to prevent death in end-stage dementia.  Notice= I am saying end- stage, not any stage of dementia.  Early stage dementia is a whole different animal and a person in that stage is aware of their surroundings usually, can enjoy life, etc.

 

(snip)

 

When you get into the end-of-life discussions with doctors who *get it*, they do make this distinction.  Pain meds?  Absolutely.  Asthma meds?  Yup.  But it is targeted at relief, not improvement or cure.  

 

So when my dad went to the hospital for the last time, he was on hospice, and they treated him accordingly.  No chemo for the cancer that was causing his death.  But he was kept pain-free and comfortable.  He had minor surgery that very morning, and that received expert wound treatment.  But nothing was done to extend his life by beating back the cancer.  That was as he wanted it.  

[FaithManor]

Particularly if the need for care resulted from a lifetime of willfully irresponsible choices.

 

Anyone who has not served as a full time caregiver to an adult that lacks cognitive function yet still has the ability to create emotionally and physically demanding situations, cannot fully comprehend what it's like to do it for a full 24 hour cycle, days, weeks, years on end. I'm not trying to shut down comments from anyone who hasn't done it, but suggest that if you haven't walked this road, or in tandem with someone who is doing it, you likely need a reality check. Things come up that you never could have imagined.

 

Home care is not cheaper. If you price private full time services equal to a nursing facility, it's way pricier. If you expect a family member to do it, you still need respite caregivers. Dementia patients don't keep normal schedules, and unless you never plan to leave the house and can groceries etc shipped to your door, you need sitters. You need to childproof the house to beyond the degree necessary for children. You have to figure out patient transport to medical visits. The caregiver sacrifices an income and more, as their own relationships drop off because they are no longer free to commit to any activity other than caring for the elder. Children of caregivers have their activities restricted because their parent is not free to transport them to games, practices etc. The caregivers' own physical and emotional health suffers to a degree that results in increased medical costs. I could go on and on...

I nearly lost my marriage over it. I don't know how to describe how bad it is except to say 27 years of rock solid, 100% devoted, best friends marriage, and then, bam...talking about separating.

 

That is what this kind of care giving does.

 

So the elderly, near death for ages on end get to have "quality of life" and the rest of us have our souls sucked right out of us.

 

And then we figure out how to keep the surviving spouse out of homeless shelters and dumpster diving for food.

 

Sigh... and meanwhile, he just keeps demanding care that has to be racking up a half million dollars, payments my mom can't make, leaving her penniless and a shell of a human being. But we are the bad guys because for some strange reason "you owe this to your father". Uhm...no.

[Guest]

I nearly lost my marriage over it. I don't know how to describe how bad it is except to say 27 years of rock solid, 100% devoted, best friends marriage, and then, bam...talking about separating.

 

That is what this kind of care giving does.

 

So the elderly, near death for ages on end get to have "quality of life" and the rest of us have our souls sucked right out of us.

 

And then we figure out how to keep the surviving spouse out of homeless shelters and dumpster diving for food.

 

Sigh... and meanwhile, he just keeps demanding care that has to be racking up a half million dollars, payments my mom can't make, leaving her penniless and a shell of a human being. But we are the bad guys because for some strange reason "you owe this to your father". Uhm...no.

(((FM)))

 

When I was about 14, my mom asked what I thought of her mother coming to live with us.  I was a GOOD GIRL kid, but my response was flat out:  "If she moves in, I move out."  And I meant it.  I

 

loved my grandma, but she was a control freak and she ran my mother ragged.  She had her nose in everyone's business and an opinion about everything.  My dad was a pretty passive guy but when he and mom were newly married, he stood up to my grandma and told her that if she didn't get off my mom's back, he and mom would move 1000 miles away and never send a forwarding address.  

 

I think my mom was a little relieved at my response, to tell the truth.  It would have been a TERRIBLE thing for our family to have her move in.  My grandma lived a couple more years, and we got some housekeeping help, some cooking help, and went to see her every day in her last year (I could drive the 20 miles by then).  It wasn't that we didn't love her.  We just couldn't live with her. 

[Joker]

n/m 

 

Edited March 6, 2017 by Joker

[FaithManor]

(  It wasn't that we didn't love her.  We just couldn't live with her. 

That right there. That's the thing. 

 

I think people forget that in the "good old days" the vast majority of the elderly, or the very sick, the very injured, did not live for years one end. There weren't medical treatments and devices to prop them up. So in the short term, taking care of a not particularly nice person was a problem but not something that would necessarily destroy a family and ruin everyone else's health. Now? You can have someone be an invalid with congestive heart failure for a decade. You can have a cancer patient with a terminal illness go for three years with all of the treatments and drug regimens to support the internal organ, life support, feeding tubes, IV hydration, ....

 

Enduring for a month or two, Yes? Three years? For many of us, there won't be anything left to salvage by then.

 

Just so you all know. Dh and I are in a good place now. God Bless that man for sticking it out! The boundaries are in place, which of course now makes me the bad daughter. The black sheep. The wicked witch of the west, but so be it.

When he is gone, my family is still here, and they deserve to have a mother who at 48 still has something left to give instead of one that is in the corner curled up in the fetal position bawling her eyes out unable to cope any longer.

 

Oh, and I told the county prosecutor that if my dad pressed charges of elder neglect against me, that I would be dressed nicely for the cameras at my arrest, and welcome the night in jail because it would be a welcome respite.

 

He was not amused, but got the message.

Edited March 6, 2017 by FaithManor

[Guest]

That right there. That's the thing.

 

I think people forget that in the "good old days" the vast majority of the elderly, or the very sick, the very injured, did not live for years one end. There weren't medical treatments and devices to prop them up. So in the short term, taking care of a not particularly nice person was a problem but not something that would necessarily destroy a family and ruin everyone else's health. Now? You can have someone be an invalid with congestive heart failure for a decade. You can have a cancer patient with a terminal illness go for three years with all of the treatments and drug regimens to support the internal organ, life support, feeding tubes, IV hydration, ....

 

Enduring for a month or two, Yes? Three years? For many of us, there won't be anything left to salvage by then.

 

Just so you all know. Dh and I are in a good place now. God Bless that man for sticking it out! The boundaries are in place, which of course now makes me the bad daughter. The black sheep. The wicked witch of the west, but so be it.

When he is gone, my family is still here, and they deserve to have a mother who at 48 still has something left to give instead of one that is in the corner curled up in the fetal position bawling her eyes out unable to cope any longer.

 

Oh, and I told the county prosecutor that if my dad pressed charges of elder neglect against me, that I would be dressed nicely for the cameras at my arrest, and welcome the night in jail because it would be a welcome respite.

 

He was not amused, but got the message.

Glad you are in a better place.

 

My cousin took care of her mother for 20 years while she was dying of cancer. She wasn't bitter about it, but there went her child-bearing years because her mom was so demanding.

 

Same thing for my sister's college roommate.

 

Neither is bitter but they do mourn the lack of a marriage and children.

 

Everybody counts. We owe what we can give but that has to be an offering and not an extraction and everybody matters.

[StaceyinLA]

I don't think one answer fits all. My dad died at almost 88. In the 8-10 years before then, he was mostly a healthy old guy who liked to walk, grocery shop and play with his grandkids. He did end up in the ICU a few times during that time- blood clot, cdiff (doctors still prescribe antibiotics without probiotics and it literally almost kills these older people). However, once better and out, he resumed his activities. He didn't want to die and wasn't ready. Now his last 6 months were different. He still didn't want to die, but his body didn't agree. When he finally realized he was not going to get better this time, he agreed to hospice. I would not have wanted someone to say during those previous 8-10 years- "oh he's old, he's not worth trying to heal." And he certainly didn't want it either.

C-diff is what ultimately did my mom in at 87. She had issues, as she was fighting leukemia and had some dementia, but up until she fell and broke her hip, she was physically in pretty good shape. After the fall, she was really recovering well and could stand herself up with no help in rehab within a week of surgery. Then, she got a UTI and her progress stopped. They basically gave up on her, and moved her to skilled care at a nursing home. Thanks to all the meds, she wound up with C-diff and that was really the beginning of the end. It was horrible to watch.

 

I feel like so much of our medical practices revolve around meds on top of meds instead of trying to get to the roots. My mom was on a ridiculous amount of medication in that nursing home; most absolutely unnecessary. I finally got her GP in there and told him to take her off of everything except pain meds as needed. I mean what was the point in fighting her to take meds every day that were doing NOTHING for her.

 

I have a pretty bad attitude towards end of life care because of what I witnessed with my mom. Our priorities are really screwed up in this country with regards to life and death.

[Guest]

Was the twenty years lack of boundaries, or was she actually providing nursing services because the insurance would not?

[FaithManor]

Was the twenty years lack of boundaries, or was she actually providing nursing services because the insurance would not?

I don't know about her situation, but in my dna donor's, Medicare does not pay for much of any in home services and expects the family to do everything - you would not believe the complex nursing procedures they expect my other to oversee.  And there are laws on the books that make it possible for a patient who does not want hospice and will not agree to go to a nursing facility to sue his/her next of kin for refusing to provide it under elder neglect and abuse laws. He refuses hospice, and she can absolutely be forced to care for him, and apparently according to the local prosecutor, so can my brother and I. I picked my dress for my arrest just in case and told the prosecutor to go ahead and try it. I planned on looking nice when they came for me, and the night in jail would be a welcome break. I also told him I'd be submitting letters and articles to the Detroit News, Washington Post, New York Times, all of my state and federal senators and representatives, and angle for Dateline Special in which I'd be sure to drop his name several times.

 

So far he has chosen not to pursue the charges against me and my brother that dna donor attempted to file.

 

More states are doing this too. Nursing home and in home health care is expensive so demanding relatives become nurses, aides, etc. full time while trying to raise their families and work jobs seems to be a good idea to the powers that be...you know...the rich ones who will always have the cash to pay for household help and in home nurses.

 

My father in law died by inches for three years and refused to go to a hospice facility. His state only provided four hours per week of in home care on hospice. We lived 1400 miles away and could not afford for dh to lose his job. So my mother in law did it all, and it took years and years off her life, tanked her health. This is apparently acceptable. Sigh......

[Seasider]

I don't know about her situation, but in my dna donor's, Medicare does not pay for much of any in home services and expects the family to do everything - you would not believe the complex nursing procedures they expect my other to oversee. And there are laws on the books that make it possible for a patient who does not want hospice and will not agree to go to a nursing facility to sue his/her next of kin for refusing to provide it under elder neglect and abuse laws. He refuses hospice, and she can absolutely be forced to care for him, and apparently according to the local prosecutor, so can my brother and I. I picked my dress for my arrest just in case and told the prosecutor to go ahead and try it. I planned on looking nice when they came for me, and the night in jail would be a welcome break. I also told him I'd be submitting letters and articles to the Detroit News, Washington Post, New York Times, all of my state and federal senators and representatives, and angle for Dateline Special in which I'd be sure to drop his name several times.

 

So far he has chosen not to pursue the charges against me and my brother that dna donor attempted to file.

 

More states are doing this too. Nursing home and in home health care is expensive so demanding relatives become nurses, aides, etc. full time while trying to raise their families and work jobs seems to be a good idea to the powers that be...you know...the rich ones who will always have the cash to pay for household help and in home nurses.

 

My father in law died by inches for three years and refused to go to a hospice facility. His state only provided four hours per week of in home care on hospice. We lived 1400 miles away and could not afford for dh to lose his job. So my mother in law did it all, and it took years and years off her life, tanked her health. This is apparently acceptable. Sigh......

Filial responsibility laws exist in many states. Though my research seems to indicate that they gonlargely unenforced, I've read more recently that with budget cutting under healthcare reform, there's thought that they may start being more regularly enforced. One more incentive to talk with each other about senior living and care plans, and how to fund them, well in advance of the time of need.

[Guest]

Unfortunately having the talk doesn't matter when the senior is determined to pass the buck rather than plan ahead and set something aside for there own expenses. Add in letting the home decay because vacation is more important. I would like fast food, casino, and cruises to be taxed heavily for every senior they sell to who doesn't have proof of a funded plan for body disposal.