A Life Worth Ending

[castoriehandley93]

Have you read this? This article was posted last 2012 but it was only until recently that I read this. It's about the author's mother  who has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory and the sad reality of the nursing industry of our country. It's a hard sad story that I think we should definitely read.

On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.

I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.

It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.

I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.

And yet, on the verge of writing the check (that is, the first LTC check), I backed up.

We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.

And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?

“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws."

Full article here: http://nymag.com/news/features/parent-health-care-2012-5/

[franklin w. dixon]

It's pretty "weird" that nobody specifically seeks out you know "massive heart surgery for an 84 year old woman with dementia" and yet for some reason it keeps happening *team of heart surgeons and hospital administrators simultaneously pay off lexuses*

[iris lily]

I read 3 pages and like most navel-gazing NYT pieces it was fine, but really: what is the practical outcome of this thought piece? So what are we supposed to do with the oldsters, give them a big shot of phenobarbital?

My mother died after spending about 6 years in a nursing home, declining with dementia. I assure you that we did nothing to keep her alive and even fairly early on, stopped her expensive-to-the-taxpayers Arecept (Alzheimer's medication.)

If someone is performing heart surgery on dementia patients at age 86 as PP says, well, that is obviously stupid and wrong. I also think it's unusual, but I didn't read the entire article and if there are stats on that kind of thing, I missed it.  But one way around that would be for a Medicare death panel to put a stop to dat chit.

[begood]

My dad had a pacemaker put in at 92. He has a DNR directive, but he suspended it for that procedure, saying that if his heart stopped in the process, he wanted them to do whatever it took to get it beating again. So we had to do a whole thing with signatures, etc., to make sure that his DNR didn't go into effect in that instance.

*shrug* that was two years ago and he's still hanging in there. :)

[tofuchampion]

I work in a hospital - on a surgical floor, no less - and yes, people are having massive operations done on their 80-something demented parents. They also like to keep full code status, no matter how much anyone explains that doing CPR on your 90yo, 80-lb grandma is definitely going to break her ribs, and probably kill her in the process. It's sad and frustrating, but a lot of ppl don't know how to let go.

[resy]

I am actually going to draw up some legal document stating that once I get old I dont want any extreme care to be kept alive. If its my time to go, its my time to go; i can only hope to live my life in a manner that makes the decision/transition easier and as peaceful as possible.
Ivll have retirement savings and some sort of protection/basic health care to not become a burden but other thsn that I too dont see it as living anymore. I might be a minority in thinking this way though.

[iris lily]

I work in a hospital - on a surgical floor, no less - and yes, people are having massive operations done on their 80-something demented parents. They also like to keep full code status, no matter how much anyone explains that doing CPR on your 90yo, 80-lb grandma is definitely going to break her ribs, and probably kill her in the process. It's sad and frustrating, but a lot of ppl don't know how to let go.

Well, I would venture to say that if they were paying for those surgeries themselves, they'd be thinking more carefully about it. I reeeeeely want the death panels to address these issues.

[iris lily]

I am actually going to draw up some legal document stating that once I get old I dont want any extreme care to be kept alive. If its my time to go, its my time to go; i can only hope to live my life in a manner that makes the decision/transition easier and as peaceful as possible.
Ivll have retirement savings and some sort of protection/basic health care to not become a burden but other thsn that I too dont see it as living anymore. I might be a minority in thinking this way though.

Your criteria for "extreme care" needs to be specified of course, that happens in an end of life directive. There are many choices to make about what care you will tolerate and what care you will not tolerate.

I read a book recently about a young couple who had a baby and the baby was born with severe brain injury. They decided to "let him go" and it took 30+ days for that kid to starve to death. I am not saying they did the right wrong thing, but I am saying that they chose a path that was damned hard for everyone including the poor little baby.

edited to make a little more sense

[sheepstache]

My dad had a pacemaker put in at 92. He has a DNR directive, but he suspended it for that procedure, saying that if his heart stopped in the process, he wanted them to do whatever it took to get it beating again. So we had to do a whole thing with signatures, etc., to make sure that his DNR didn't go into effect in that instance.

*shrug* that was two years ago and he's still hanging in there. :)

That makes sense to me. Something could go wrong during a surgery and require resuscitation even in a healthy person, so that's a bit different from deciding to not do anything because your body gave up on its own.

I knew someone whose relative was advised by a doctor not to have some procedure (maybe to remove cancer?) because it carried a lot of risks and, frankly, at his age, wouldn't extend his life expectancy. But he opted for it because it would make the rest of his life more comfortable and if he couldn't have that then he preferred to die on the table. That was the win-win solution for him.

I reeeeeely want the death panels to address these issues.

Hahaha!

[Lkxe]

http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/ I was watching this video when I read this post- "spooky" http://www.pbs.org/newshour/bb/doctors-argument-living-longer/

[Primm]

I read a book recently about a young couple who had a baby and the baby was born with severe brain injury. They decided to "let him go" and it took 30+ days for that kid to starve to death. I am not saying they did the right thing, but I am saying that they chose a path that was damned hard for everyone including the poor little baby.

End-of-life decisions with babies are much more problematic than the other end of the life cycle though. For one thing it's very hard, unless a baby is dependent on a ventilator to breathe, to "let them go". Brain stem activity can sustain a tiny life for a very long time. I've cared for babies who have been basically left anencephalic (with no brain) following a massive bleed at birth, and they've gone on for months, and in some cases years. Fully bottle fed, breathing on their own. It's cute when they're babies but becomes a massive life drain for the families when they never progress beyond this stage.

We have a point when we're counselling families about redirecting care on their babies to comfort measures only where we say they've missed the boat. They will survive if we do the usual actions around pulling the tube and giving them pain relief. It's a really hard place to be in as a health care worker, and I can't even begin to imagine how much more difficult it is for the parents.

[iris lily]

I read a book recently about a young couple who had a baby and the baby was born with severe brain injury. They decided to "let him go" and it took 30+ days for that kid to starve to death. I am not saying they did the right thing, but I am saying that they chose a path that was damned hard for everyone including the poor little baby.

End-of-life decisions with babies are much more problematic than the other end of the life cycle though. For one thing it's very hard, unless a baby is dependent on a ventilator to breathe, to "let them go". Brain stem activity can sustain a tiny life for a very long time. I've cared for babies who have been basically left anencephalic (with no brain) following a massive bleed at birth, and they've gone on for months, and in some cases years. Fully bottle fed, breathing on their own. It's cute when they're babies but becomes a massive life drain for the families when they never progress beyond this stage.

We have a point when we're counselling families about redirecting care on their babies to comfort measures only where we say they've missed the boat. They will survive if we do the usual actions around pulling the tube and giving them pain relief. It's a really hard place to be in as a health care worker, and I can't even begin to imagine how much more difficult it is for the parents.

Oh I know, I meant to write that they pretty much did the right thing in my book but it's very tough to do.

[franklin w. dixon]

I am actually going to draw up some legal document stating that once I get old I dont want any extreme care to be kept alive. If its my time to go, its my time to go; i can only hope to live my life in a manner that makes the decision/transition easier and as peaceful as possible.
Ivll have retirement savings and some sort of protection/basic health care to not become a burden but other thsn that I too dont see it as living anymore. I might be a minority in thinking this way though.

Your criteria for "extreme care" needs to be specified of course, that happens in an end of life directive. There are many choices to make about what care you will tolerate and what care you will not tolerate.

I read a book recently about a young couple who had a baby and the baby was born with severe brain injury. They decided to "let him go" and it took 30+ days for that kid to starve to death. I am not saying they did the right wrong thing, but I am saying that they chose a path that was damned hard for everyone including the poor little baby.

edited to make a little more sense

I had an (elderly) family friend with a similar outcome. He was mentally present but mostly paralyzed and terminally ill and refused to be fed. It took him 25 days to die.

[RunningWithScissors]

Timely post.  I spent my Sunday with my father in his nursing home.  He's in the final stages of MSA - an incurable, devastating disease (think ALS + dementia).  He's sustained by the best nursing care the Canadian health care system can provide but begs visiting family to kill him at every visit.  It's his, and our, worst nightmare - I can't even express the litany of horrors and indignities he's suffering.  And yet, our system will ensure his life is extended to the last possible moment.

On the other hand my grandmother, who is in her mid-90's, is a vital and energetic woman.  She's suffering from a blocked artery in her abdomen which causes extreme back and leg pain, but has been refused surgery due to her age.  She's of the opinion that taking a chance would be preferable to living in constant pain and she'd love the chance to have the admittedly risky surgery.  She's got bingo games to get to, dammit, and doesn't have time for this nonsense!  But for her, there's no help.

Two sides of the same situation.  I just wish our health care system offered more flexibility and choice.

[iris lily]

Timely post.  I spent my Sunday with my father in his nursing home.  He's in the final stages of MSA - an incurable, devastating disease (think ALS + dementia).  He's sustained by the best nursing care the Canadian health care system can provide but begs visiting family to kill him at every visit.  It's his, and our, worst nightmare - I can't even express the litany of horrors and indignities he's suffering.  And yet, our system will ensure his life is extended to the last possible moment.

On the other hand my grandmother, who is in her mid-90's, is a vital and energetic woman.  She's suffering from a blocked artery in her abdomen which causes extreme back and leg pain, but has been refused surgery due to her age.  She's of the opinion that taking a chance would be preferable to living in constant pain and she'd love the chance to have the admittedly risky surgery.  She's got bingo games to get to, dammit, and doesn't have time for this nonsense!  But for her, there's no help.

Two sides of the same situation.  I just wish our health care system offered more flexibility and choice.

I'm sorry to hear about your father's situation, this is tragic. What is it that you want as "flexibility and choice?" euthanasia, I presume. Look, I agree with you in theory, but in practice it a tough thing to administer.

I don't see how "the system [is ensuring] that his life is extended until the last possible moment" because surely you've removed all trappings of life support, yes? Or is that not allowed in Canada?

[dhream]

I am actually going to draw up some legal document stating that once I get old I don't want any extreme care to be kept alive. If its my time to go, its my time to go; i can only hope to live my life in a manner that makes the decision/transition easier and as peaceful as possible.
Ivll have retirement savings and some sort of protection/basic health care to not become a burden but other than that I too don't see it as living anymore. I might be a minority in thinking this way though.

Hi Resy,
You might not be in as much of a minority as you think! There are at least two organisations online that humanely and intelligently embrace this difficult subject.
I write of course, about the right to choose a dignified and painless passing, when clearly no hope of recovery is possible.
There is such a legal document you describe, prepared professionally to ensure your wishes are respected, without a drawn out legal fuss if the worst should happen, it is called a 'living will'.
Any thinking person ought consider one, it is not only used in case of old age decline, but if you were to be incapacitated 'before your time' in a car crash, for example, you can direct life support to be withheld after a certain point.
This is a very controversial subject, as it necessarily crosses over into 'voluntary euthanasia', which is not to be muddled with suicide, where serious mental distress is the determinant.
However, when approached from the 'mustachian' perspective, there is probably nothing more 'badass' as deciding on your day of departure, in a rational, predetermined, and downright sensible decision making process, before the ability to do so is beyond your control. Now that is the ultimate in freedom!
I hope this, my opening post on this forum garners some intelligent debate; it is past time we questioned the convention that animals can be euthanised, yet humans should linger on in abject indignity and decrepitude, in many cases sustained by machinery alone, to die horrifically painful deaths for the sake of tradition, religion, or any other of societies constructs. If a person is robbed of all that makes life worth living, and clearly has no wish to prolong their suffering, then prolonging life under these conditions is inhumane, and that, to me, is the ultimate test of whether it is right or not.

[MrsPete]

Women in my family tend to live into their high 90s.  Thus, I don't really see a problem with a heart surgery at 85 or so -- after all, if my grandmother had had heart surgery at 85, she would've had another 15 years to benefit from it. 

Two big disclaimers:

- Her mind was 100% good until her last year.
- Though she was frail and slow, her health was good --  no diabetes, no kidney disease, no heart disease -- thus, it wouldn't have seemed "wasteful" for her to have had an expensive surgery.  If you were talking about a same-aged person whose body was already failing in other ways, the surgery wouldn't have made sense. 

It always comes down to this:  We as a society have decided we don't want anyone "left behind", and that sometimes means procedures that don't always make sense. 

[Lyssa]

It's really paradoxical: Everyone wants to be as healthy as possible for as long as possible but if you're lucky enough to be a healthy 80 year old you're odds of having your brain and personality die before pneumonia or some organ failure gives you a way out are quite scary.

My parents have already taken care of two old relatives with dementia till their death and are presently taking care of my grandmother who always has been "difficult" (read: selfish and ever complaining) and it really has taken a toll on them. They have lost (and continue to lose) years of their own lives and they have aged beyond their years.

I don't think that the present course is desirable or sustainable with ever increasing longevity and declining birth rates. I have no solution for this but to allow assisted suicides for those who are terminally ill, still mentally competent and ask for it would be the bare minimum. Life should be viewed as a gift, not an obligation. And the above described patients should not be forced to choose between suffering and losing their dignity and personality or ending their life in incompetent, violent and dangerous ways and possibly traumatizing their loved ones.

[train_writer]

I hesitated to respond on this, but I feel i have to. My mother is aged 54 and has had a massive cerebal infarction at age 40. She is able to function on most of the days, but suffers from deep depression and regular apraxia of speech and movement. As much as I love her dearly, there are days I think (and she as well), why bother with trial X worth € 40k again? We are in the Netherlands, where this is something you can openly discuss with your doctor. They won't refuse care at a certain age, but they will openly discuss the costs and prospects.

Our doctor told us that many who are already on full assisted living (aged 80+), decide not to take certain operations based on that, without pressure of the doctor. Also, the number of (older) people with a 'no resuscitation' tag is growing*.

It is a discussion very fragile and should absolutely stay guilt free, but it is worth questioning every now and then. What is life worth to you, what is your personal limit (which you can only know when you are there)?

[VirginiaBob]

Not me -  keep me on life support as long as possible, and after that, I expect my brain to be frozen so that it can be placed in a robot with with giant claws at a later time.

[RFAAOATB]

Not me -  keep me on life support as long as possible, and after that, I expect my brain to be frozen so that it can be placed in a robot with with giant claws at a later time.

Make sure you partner with a reputable company.  If they can't treat Ted Williams right, what hope do you have?
http://www.dailymail.co.uk/news/article-2632809/We-did-love-Baseball-legend-Ted-Williams-daughter-finally-speaks-brother-spent-100-000-fathers-body-cryogenically-frozen.html