View Full Version : A Life Worth Ending - Elderly aging
http://nymag.com/news/features/parent-health-care-2012-5/
Longish but powerful article about the author's elderly frail and demented mother who is continuing to exist but has no quality of life. He says frankly that he wishes she would die soon.
Is our medical system geared towards prolonging death instead of letting people die a natural death? I remember when pneumonia was called "the old man's friend."
Millions of baby boomers find themselves in his situation where even as they face their own health issues in the 50s and 60s, their elderly parents need 24/7 care for many months if not years.
But beyond the obvious emotional and physical toll on family and especially caregivers, I put this in Public Policy because the numbers are staggering in terms of Medicare costs for those in the last months and few years of life, and are continuing to rise.
Thoughts?
I skimmed two articles by this author and if I got anything wrong,someone correct me but Jesus H Christ $17,000 per month to maintain this woman is outrageous and that author must be dumb as a rock to have set up that plan. His apparent lack of financial acumen does not a societal crisis make.
I was not able to find in this article the OP's assertion that the medical community is keeping this woman alive (again, WHERE is that info in the article?) and my own experience with my mother as being allowed to die a natural death disputes that. I saw no "system geared towards prolonging death" , and our wish for her to die naturally was fully and easily supported by her caregivers. I will say that when my mother stopped swallowing, I would have not intervened with human attention at that point, but the standard of treatment seems to be to put her into "hospice care" and pay (you, the taxpayers via Medicare) someone to drive into a care center and feed her one square meal a day, taking two+ hours to do so. Both my brother and I thought "what is the point of this?" but then we tend to be on the extreme end of the end-of-life support care spectrum. Just to be clear we are both Republicans! ha ha.
My mother WAS having quality of life even 'though her life was very small and limited, but not until the end was she bedridden although she couldn't talk in meaningful ways but she enjoyed watching people come and go in the nursing home.
It is hard to glean, from this article, the real quality of life of this woman, but I suspect she's got some and his son is writing in a hyperbolic fashion else why maintain her NEw York City lifestyle at $17,000 monthly. To the author I have to say: dude, get some help with your mom's life planning. Not everyone is a victim. Not every specific situation represents a crises in society.
That said, hell NO I don't want to pay for my neighbor's grandma hooked up to a ventilator for years. But I don't think that happens, often, anyway.
And finally, and this is the bottom line: we were lucky. My brother and I both assumed that our mother with her strong heart and "not a damn thing wrong with her" body would linger on and on and on in her Alzheimer's state, but Mother Nature was kind and ended her life about six months after we thought it was time. She could have lingered for years, bedridden and unknowing, and that would have been horrible.
I skimmed two articles by this author and if I got anything wrong,someone correct me but Jesus H Christ $17,000 per month to maintain this woman is outrageous and that author must be dumb as a rock to have set up that plan.
Insane as it sounds, this may not be significantly more expensive than a private pay nursing home in Manhattan.
I think GMIL costs her own estate about $3000-3500 per month. That's care in a retirement village (different levels of care) and she's in the locked ward for people with dementia.
She has her own room, three meals a day, day-trips that she gets signed up for (by MIL), walks through the grounds/garden, and then what I call "balloon time" which is when the common room -- where everyone in the ward hangs out in between meals and activities -- has a TV that they rarely watch, but the nurses walk in with two balloons and everyone is absolutely enthralled with those balloons and they bounce it to each other. They *love* that.
The outings, interestingly enough, are all things that DS would love -- petting zoos, flower shows, the children's science museum, etc. They'll even take them to the amusement park and let them get on the kiddie rides (gentle roller coasters, merry go round, etc). She loves these things.
She gets her meals and *two* desserts because I asked her to be put on the "two ice creams a day" diet. LOL She was loosing a lot of weight at one point, because her dementia manifests in chewing but not swallowing, but she will ALWAYS eat dessert. So, she has a 3:00 ice cream and her 8pm ice cream. It costs $7 a week extra for the extra ice cream, but she loves it! And, it brought her back to normal weight.
She is going to be 95 this year. She takes only two pills: multivitamin and vitamin D. She uses a walker, but otherwise, gets around well. She's very healthy indeed, and overall happier than she's been in a while. She has several friends, but can't remember their names. They are always reintroducing themselves to each other. She has a potential new boyfriend (if she can remember what his name is).
While I didn't think my MIL picked the best place (it's way out of town and MIL complains about having to go out there to visit her and such), and the closer place was really nice, most of GMIL's friends lived there, and it was about the same price, my MIL went with this place for whatever reason. I think that -- at the time -- it had something to do with money. It usually does. LOL
I think that GMIL will probably go another 5-10 years. Luckily, the estate is currently work about $4M. So, she's good to go.
Wildflower
5-25-12, 3:49am
My MIL's care in a Nursing home for dementia is $7000 a month. She has been there 10 years already in many different levels of care. First in assisted living, then later in a more supervised area, and now with her dementia so bad she is in the lock down area. She is 90 years old and still in pretty good health. Gets around well and enjoys many different activities there. She and her friends there enjoy very much when we bring our dogs along to visit and entertain them. Although, she often doesn't remember who we are exactly there still seems to be some sort of recognition there. So far her longterm care insurance, social security, pension, and savings, all together are covering her bills. In a couple years though her savings will be gone and she will be short what she needs to pay for her care. We are not in a position financially to supplement her, so I don't really know what we will do when that day comes. Planning to meet soon with the social worker there and see what her options will be..... It is a worry. I don't think we could care for her 24/7 with our own health problems - it would just be too much.
http://nymag.com/news/features/parent-health-care-2012-5/
Longish but powerful article about the author's elderly frail and demented mother who is continuing to exist but has no quality of life. He says frankly that he wishes she would die soon.
Is our medical system geared towards prolonging death instead of letting people die a natural death? I remember when pneumonia was called "the old man's friend."
Millions of baby boomers find themselves in his situation where even as they face their own health issues in the 50s and 60s, their elderly parents need 24/7 care for many months if not years.
But beyond the obvious emotional and physical toll on family and especially caregivers, I put this in Public Policy because the numbers are staggering in terms of Medicare costs for those in the last months and few years of life, and are continuing to rise.
Thoughts?
Wow...this is a dynamic story that absolutely fascinated me.
At the age of 81, I've long since faced up to my own mortality. I'm not the least bit afraid of dying, I know that my family will take good care of me. I hope I die at home and not in a hospital or an old folks' home with strangers taking care of me. I'd even be OK dying alone.
I have no religious concerns about going to heaven or hell, since I don't believe in them.
I've told my son I want to be cremated, not buried, and he has promised me he'd do it. He can do whatever he wants with my ashes.
MIL who is now living with us aged 93, does NOT want to go in a nursing home. When the time comes we will take her SS$ and her nest egg to pay for her care at home.
I've often thought that if I knew I was faced with a long cognitive decline I'd be tempted to end it myself and spare everyone.
My MIL died just at the tail end of a family vacation in Vermont two years ago. She was 85 and sharp as a tack, but she complained of abdominal pain and to make a long story short, she had "abdominal catastrophe"--kind of a heart attack of the gut when blood circulation stops and the bowel becomes gangrenous. The sole surgeon in this Vermont community hospital gently advised us to let nature take its course--he could open her up and try to fix things, but months of painful recovery time would ensue. He said, "if it were MY mother..." and my DH and BIL and I just looked at each other like, "so this is it??" Do we operate or say goodbye??
Complicating that decision was a little piece in the back of my mind that noted that he WAS the sole surgeon in the little Vermont hospital and if we had been home, a stone's throw from Robert Wood Johnson--a big academic hospital--would the ultimate outcome have been different? After all, my darker side said, it's Friday night and this guy probably wants to get on with his weekend--not perform hours of surgery.
Even considering that, I thought about my MIL. Every day for the past few years was like a balancing act: I'd ask her how she felt and one day her knee hurt and another day this or that ached. She was kind of miserable actually, and less engaged. She told me, "nothing is interesting to me anymore." She wasn't depressed--she never had been her whole life--she was just... tired o' livin' as they say in the song Ol' Man River. So, because of that, we all truly felt it was her time and that we needed to let her go and not subject her to a traumatic surgical procedure with dubious outcomes. She died the next day surrounded by all her children and grandchildren.
Medical advances are really wonderful but the author makes some really good points about how much we should be investing in preventing the natural course of life and death.
flowerseverywhere
5-25-12, 8:40am
MIL still feels guilty about letting FIL go at age 84. The MD's told her there was little hope for quality of life, they could try some meds or even surgery and have him end up with a colostomy. I happened to be there and asked the MD what was the point? Would he suffer or be able to go home and do the things he enjoyed. The MD said he would probably never leave a hospital or nursing home and would never walk and would have to eat a liquid diet. She decided not to be agressive and let things take their course. The next day a nurse came in and said if there is anyone that you need to have come to say goodbye, this would be the time. He stopped breathing early the next morning.
Even at age 60 if I was told I had cancer I would think very hard about what treatment to consent to. It would depend on the stage and the chance for recovery. I have seen several friends who did not catch it early go through long periods of surgeries, chemo, radiation over and over finally dying in pain. Some have had one course of a drug or a surgery and have recovered and gone on with their lives of course.
I'm not afraid to die. I don't believe in god or heaven or hell. It's the simple joys of every day that I live for, what can I do to make my life and that of those around me better.
Unfortunately, this is a subject that has been "in my face" over the last several weeks. I just lost my 86 year old dad. Two or three weeks before his death, I would have never seen it coming. Now in hindsight, it has been tip-toeing up to us for a long time. Dad died early this month, and the official cause of death was pneumonia complicated by dementia. The reality of that was dad could no longer swallow. There is an accumulation of fluids that healthy persons swallow throughout the day unconsciously - but he couldn't, so the stuff slides down into the lungs and causes infection. We met with the doctor/neurologist/care teams/social workers/hospice employees several times. The questions that are asked are so heartbreaking... you truly are in a moral dilemma. Some people feel that taking no action is the equivalent of murder. Others feel that it is merciful to allow nature to take it's course with no intervention. There is no right or wrong answer. But, I now can appreciate the philosophy of assisted death. Why can we help our animals come to a peaceful conclusion of life, but not a human?
My experience has opened my eyes to some conversations that just MUST be had. One needs to tell those who will be left behind what measures to take. One needs a living will and a standard will. A DNR (do not resuscitate) should be completed - with whatever selections you deem appropriate. Organ donation. Discuss your wishes to be cremated or not - buried or not - where to put the ashes, if cremated - whether to have a religious service - type of viewing, funeral / memorial service. Come on people - we will all die some day. Why are these things not discussed? It is a REALITY we must all face. Please make it easier on those you love by letting them know your wishes.
This is thought provoking. It strikes me that the author has way more means than most of us. At least his mother is not in a urine soaked bed in a Medicare facility as mine was after her stroke. She was one of those cases who did exist on a ventilator and feeding tube for three years. It was sheer agony to visit knowing there was nothing I could do. She had not done any of the paperwork and so her doctor would give her antibiotics every time she came down with pneumonia. After a stern talk from my older brother, the doc finally let her go. Keeping the old-old alive now IS an industry and nothing more. We will soon enter this situation once again with my in-laws as they are becoming feeble, having falls, etc. I know they have pre-made all their burial pans but the rest is a mystery as some families never talk about these things.
My brother, who works in health care in respiratory therapy with those at the very beginning of life and the very end who are quite ill, told me that I can write all of the health care directives that I like, but the doctors are going to look at my family (specifically DH) for ultimate direction. I'd better get DH on board with what I want.
For some years I wanted my brother to be my medical decision maker 'cause I wasn't sure that DH would take the "hands off" approach that I want, but since then we've had a talk or two that convinced me he will do the right thing. I get a preview of his approach with all of the pet deaths we have around here. I am always ready to take them to the vet for euthanasia before he is.
I skimmed two articles by this author and if I got anything wrong,someone correct me but Jesus H Christ $17,000 per month to maintain this woman is outrageous and that author must be dumb as a rock to have set up that plan. His apparent lack of financial acumen does not a societal crisis make.
I was not able to find in this article the OP's assertion that the medical community is keeping this woman alive (again, WHERE is that info in the article?) and my own experience with my mother as being allowed to die a natural death disputes that. I saw no "system geared towards prolonging death" , and our wish for her to die naturally was fully and easily supported by her caregivers. I will say that when my mother stopped swallowing, I would have not intervened with human attention at that point, but the standard of treatment seems to be to put her into "hospice care" and pay (you, the taxpayers via Medicare) someone to drive into a care center and feed her one square meal a day, taking two+ hours to do so. Both my brother and I thought "what is the point of this?" but then we tend to be on the extreme end of the end-of-life support care spectrum. Just to be clear we are both Republicans! ha ha.
My mother WAS having quality of life even 'though her life was very small and limited, but not until the end was she bedridden although she couldn't talk in meaningful ways but she enjoyed watching people come and go in the nursing home.
It is hard to glean, from this article, the real quality of life of this woman, but I suspect she's got some and his son is writing in a hyperbolic fashion else why maintain her NEw York City lifestyle at $17,000 monthly. To the author I have to say: dude, get some help with your mom's life planning. Not everyone is a victim. Not every specific situation represents a crises in society.
That said, hell NO I don't want to pay for my neighbor's grandma hooked up to a ventilator for years. But I don't think that happens, often, anyway.
And finally, and this is the bottom line: we were lucky. My brother and I both assumed that our mother with her strong heart and "not a damn thing wrong with her" body would linger on and on and on in her Alzheimer's state, but Mother Nature was kind and ended her life about six months after we thought it was time. She could have lingered for years, bedridden and unknowing, and that would have been horrible.
Agreed! Hell, for $17,000 you could hire a live in nurse and still have plenty left over.
With severe dementia, well, I think about an old dog my mother used to own. This dog was mostly blind, deaf, arthritic, and a host of other problems. The joke was, he died years ago, he just forgot to fall over. With some parents, I think we mourn their passing long before they actually pass because the person sitting before you isn't really your parent, or anyone you recognize. By the time this person passes, your mom/dad has been long gone and buried in your mind.
The medical community isn't really in some conspiracy to keep old people alive beyond reason. It is actually quite practical in it's approach. If you see an old person on a ventilator or on an aggressive course of medical action, you can bet it's that old person, or his/her family that is insisting on this action. The doctor and nurses may be gently encouraging the family to let go, but if they insist, the medical community isn't going to refuse.
It's not really a political issue. No matter which party is in charge, the medical community isn't going to refuse treatment if the family insists on treatment. And whether a family insists on treatment or decides to let go isn't determined by political affiliation.
.... I know they have pre-made all their burial pans but the rest is a mystery as some families never talk about these things.
Fortunately both my parents and DH's parents talked about this stuff.
You can't force your In Laws to talk, but what does your husband say about situations of other people the age of his parents? He will be involved in making these decisions and he could practice scenarios in his head for possible future decision making.
Like the author of the article, people who are surprised by a sudden health catastrophe (the author's mother's heart surgery) will tend to make the decision to treat it. Those who have had time to think about options and consequences will not feel so pressured to "save" the life of the patient since reality thinking reveals that is not possible.
Pinkytoe, I am surprised that the doctors was treating your mother against your stated wishes for 3 years, especially with the invasive things of feeding tubes and ventilators.
To me, losing a swallow reflex is a gentle sign from Mother Nature that she is starting to shut down the biological unit. All kinds of problems result from trying to treat that including aspiration pneumonia and really, what is the point? More pain and invasive treatment.
I like Zoebird's solution: give her ice cream! If that motivates the Grams to swallow and keep some weight on--that's great.
.... And whether a family insists on treatment or decides to let go isn't determined by political affiliation.
Oh I know, I said that about Republicans just to get a rise out of someone. Thanks for stepping up! ha ha.
Pinkytoe, I am surprised that the doctors was treating your mother against your stated wishes for 3 years, especially with the invasive things of feeding tubes and ventilators.
Sadly, I'm not surprised. If there's any sign of disunity in the family, if family members cannot strongly advocate for the patient, or if they don't have a living will and legal documents allowing them to make medical decisions, it is the most likely result.
My sister has been an intensive care RN in an inner-city hospital for 30 years, and while she is often appalled by continuing treatment in these cases, she stops short of saying it is financial.
I don't have a handle on it, but I understand there traditions and teachings in Judaism that lean towards continuing treatment more than in Christianity. This tradition has an effect on everybody in regions where most physicians are Jewish, such as metro New York City.
http://www.myjewishlearning.com/beliefs/Issues/Bioethics/Euthanasia/Modern/End_of_Life_Issues.shtml
Recent trends in Catholicism view any removal of life support once started as active euthanasia, and in violation of church rules.
Agreed! Hell, for $17,000 you could hire a live in nurse and still have plenty left over.
I believe this sum was paying for two full-time nurses and a Manhattan apartment.
flowerseverywhere
5-25-12, 10:35am
also, if you don't have a written instructions that someone is willing to fight for the medical community can have it's hands tied. If you show up in an emergency room having difficulty breathing and you are 96 and can't see, hear or walk, they are going to help you breathe. Or they will risk a lawsuit. The medical community can't play god.
I agree with the other posters to get your family on board. Get things in writing the best you can. Fight for what your loved ones want if the time comes.
I am surprised that the doctors was treating your mother against your stated wishes for 3 years
Well this was way back in 1989 and I was also taking care of my brother dying of AIDS so I wasn't always in the best state of mind to advocate for her. My other sibs were far away blissfully unaware of the reality of her bleak life. I remember thinking though that as long as that doc got his Medicaid payment for "visiting" her once a week, then he was just fine with the situation.
I agree with the other posters to get your family on board. Get things in writing the best you can. Fight for what your loved ones want if the time comes.
In 2012, I suspect adding video evidence, spoken by the patient, to the legal documents would also be useful.
Oh I know, I said that about Republicans just to get a rise out of someone. Thanks for stepping up! ha ha.
Sorry to disappoint you Iris L but I wasn't actually 'rising' to what you said. I was speaking to the OP's wondering if this was a political discussion or not. I feel it isn't.
But, thanks for stepping up and trying to get a rise out of someone. I guess we can't have a discussion in this forum without someone trying to make it political. Ha Ha.
My Dad took care of every detail of things that would follow his death very shortly after a Parkinson's and dementia diagnosis. Having all the arrangements made was a God send to my Mom when he died, a final act of love really. The sad part, in a bizarre way, was that Dad was never hooked to anything with a plug to pull. Like so many others it was a slow slide out of life. Had the level of care been lower he would have certainly died much sooner, but that likely would have coincided with the loss of his quality of life which is what he would have preferred. DW and I have clear understandings and written instructions regarding our own ends, but when there is no clear line that gets crossed it is extremely difficult for everyone involved.
When my father had a stroke (in his late eighties), one of his doctors approached me and my partner about discontinuing his fluid drip--apparently to speed up his death. (Note my partner had zip legal standing, even if Father did consider him the son he never had.) I said "Why don't you ask him?" Father declined a feeding tube but opted for fluids until he was able to move to a facility that wasn't interested in exercising its GOMER option. He lived for several more years. But we could have snuffed him just like that, with the help of Dr. First Do No Harm.
On the other hand, my mother wanted to go but it took us weeks to get hospice assigned--over objections particularly from one obnoxious doctor who acted like we were trying to do her in for our own devious ends. I can't think back on my parents' medical nightmares without anguish to this day. But I'd love to meet Dr. Flanagan or whatever the hell his name was again for one last discussion.
I hope I die in my sleep.
lmerullo,
i'm sorry for your recent loss.
Because my sister lives closer to my parents (and they are in a relationship triangle anyway), I've asked my sister to take on this discussion. DH will do so with his parents, but if I'm around, they reject even discussing it. They are in a codependent triangle with my SIL, and more likely to discuss such things with her, which is fine.
For my own part, DH and I both have living wills with very clear descriptions, and power to make the ultimate decision going to a friend of mine -- a lawyer -- who is more distant than DH would be. I know that seems odd, but there it is. She's a paramedic as well (before becoming a lawyer) which I think gives her the unique position to make a decision based on best evidence and practices, as well as the intention and spirit of the living will.
Have to add another set of numbers from the article:
"There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds. ..Dementia care in 2012 = $200 billion. In 2050, it will be $1 Trillion."
This is why our country seriously has to consider the moral, ethical, and yes financial cost of heart surgery on an 84 year old who already has dementia, as the author's mother did. Bottom line: can we allow families to direct doctors to "do everything" and who then hand the medical bills to the taxpayers?
Have to add another set of numbers from the article:
...This is why our country seriously has to consider the moral, ethical, and yes financial cost of heart surgery on an 84 year old who already has dementia, as the author's mother did. Bottom line: can we allow families to direct doctors to "do everything" and who then hand the medical bills to the taxpayers?
Gosh no, but if you've read my posts you know that I am in favor of "death panels" if the chaotic mess popularly known as Obamacare comes to pass.
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