NYMag: "A Life Worth Ending"
May 21, 2012 5:28 PM   Subscribe

“Old age isn’t a battle, it’s a massacre.” A son’s plea to let his mother go.
posted by ThePinkSuperhero (63 comments total) 40 users marked this as a favorite
This is quite a brilliant business model: All responsibility and liability is posthaste shifted to public emergency services and the health-care system.

$8,000 a month. For this. I'd burn the fucker down.
posted by narcoleptic at 5:49 PM on May 21, 2012 [4 favorites]

My mom is in her 80's. She is losing her eyesight, and her connection (via webTV) to the world. When she can't email anymore, she'll be dependent on the phone, which, at least, is SOMETHING.But it's very hard to see someone slowly slip away, like this.

I know that this writer is dealing with something far more difficult, but we'll all get there, with our parents.
posted by Danf at 5:53 PM on May 21, 2012

> Meanwhile, since, like my mother, I can’t count on someone putting a pillow over my head, I’ll be trying to work out the timing and details of a do-it-yourself exit strategy. As should we all.

This line reminded me of a passage in a editorial in The Globe and Mail about assisted suicide:

"In Quebec they have a big consultation under way on this issue because more than 80 per cent of the population supports assisted dying. They are ahead. You cannot escape the fact that the population is aging, resources are dwindling, and also there are a much larger number of people who no longer say, “Doctor knows best”. Baby boomers are always rebelling. Now they are going towards the end of their lives and they’re used to getting their way. They will put pressure. They have the sophistication, money and education to make a lot more hay of this."

C'mon, boomers. Make it happen.
posted by The Card Cheat at 5:53 PM on May 21, 2012 [10 favorites]

Thanks for this. I've started reading it, but will have to finish another time when it doesn't make my hyperventilate with panic and anger. My partner's dad will be 101 next month and his mom is in her 80s; we are genuinely worried that she'll die of a heart attack or stroke from the stress of caring for him (his body keeps going while his mind does not) well before he goes. And my parents: they've got decades left, probably. My sister and I are already expecting our own retirements will be compromised by their long-term care. It's one of the factors that went into my decision not try to have kids when I still had the chance a few years ago; after all, I won't be able to afford to send kids to college AND care for elderly parents, so I figured I'd pick one.

Our culture's near-total denial of mortality on all levels -- medically, culturally, socially -- is grotesque, and is causing types of suffering unprecedented in human history. On one of the cancer boards I still occasionally visit, one member is currently dying. She refuses to accept that she's dying, as do her family members, and they are essentially bankrupting themselves to keep her alive a little longer, in terrible pain and great fear -- because, after all, it's possible. This is being termed a "miracle." I think it's an absolute tragedy.
posted by scody at 5:56 PM on May 21, 2012 [56 favorites]

There are times when I think my mother dying of a heart attack at age 68 was a blessing, since she died happy and full of life. I'm ashamed of myself for feeling this way, because I imagine that she would still be happy and full of life if she were still alive. I would give an ear to hear her voice again.

But my grandmother died of Alzheimers, after an unusually long stay in a facility, long after she stopped recognizing my dad and his brothers, long after she left the world and her dignity behind. Her life became a raw wound for her family, and when she finally died I felt no emptier than I had since the doctors told us she could no longer see her family because it was dangerously bewildering for her.

I'll never ask my dad, who has lost a mother slowly and a wife quickly, which one is better. I hope he doesn't lose his ability to think before he dies, but of course I also hope he can talk to us until the end. I hope he hits a happy medium. I hope he dies a perfect death.

And for that, too, I am ashamed.
posted by Ice Cream Socialist at 5:57 PM on May 21, 2012 [11 favorites]

After seeing my mom go downhill due to cancer, I can only say that I'm all for assisted suicide (or whatever you want to call it. ). I do not want to go out the way she did.

After watching her slowly die--everything shut down---I can't gargle mouthwash anymore. For anyone who has witnessed a death rattle, you know why.
posted by stormpooper at 5:59 PM on May 21, 2012 [5 favorites]

My mom is a nurse, and she's talked about this for years. She's fond of saying that she'll resort to euthenasia if her family members are beyond saving.

About ten years ago, people's reactions were "your mom doesn't love you".

These days, people tend agree with her. And then they tell me a really sad story to explain their change of heart.
posted by jragon at 6:03 PM on May 21, 2012 [6 favorites]

We went through this a few years ago with my grandma. Luckily, she had signed a DNR, or we would all probably have suffered through several more months.
If there's one thing that watching her die slowly and painfully over the course of months taught me, it's that, when I start to go, I am going to do everything in my power to either take my own life, or drive out into the country and take the "long walk", because I really can't see that possibly being any worse. For everyone involved.
posted by KGMoney at 6:06 PM on May 21, 2012 [1 favorite]

My Dad has always said to leave him under a hedge somewhere. We don't always see eye to eye on many things, but on that we're in agreement.
posted by arcticseal at 6:10 PM on May 21, 2012 [4 favorites]

*shivers* I dread this process. The last two years of my grandmother's life were a horror, with the woman she had been gone and replaced by something else. My grandfather lived with this empty shell of emotion and half thought that had been his wife, and my mother and I could do little but watch the delayed end for the body come, when the mind was gone.

I know my mother will likely go the same way, as will I. I live in fear of it, and hope that when the time comes, my loved ones will have the strength of will to make sure I pass easily, rather than lingering.
posted by strixus at 6:12 PM on May 21, 2012

Oh, I should say, on the other hand, my father has his strategy well planned, and it is much in the way of articseal's dad. Power of attorney to me, and then he plans to vanish to the Keys. I rather like the idea, myself.
posted by strixus at 6:13 PM on May 21, 2012 [2 favorites]

And for that, too, I am ashamed.

I understand your shame, but encourage you not to feel ashamed. You want what's best for your father. You're not saying you want him to die, you're recognizing that death is inevitable and you want him to have a rich, full life to the end. I suspect he wants the same thing you do.

It might be worth having that conversation with him if you haven't. He's surely put some thought into the subject.
posted by Joey Michaels at 6:16 PM on May 21, 2012 [5 favorites]

I know we're all supposed to praise the writer for being brave and unsparing and that sort of thing, but seriously: the children mock their mother's cognitive disability ("sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats".) They stop her medication abruptly, "giddy" at the possibility that it will kill her, then are deeply disappointed that "she had withstood the shock to the system." Usually duty-to-die advocates at least maintain a pretense of compassion. Is there any evidence that this woman, who enjoys family visits, communications from friends and some moments of mental clarity, actually wants to die?
posted by Ralston McTodd at 6:20 PM on May 21, 2012 [6 favorites]

Old age, said Betty Davis, is not for sissies. I am nearly 83 (August) and when I think about those I know who are now dead, I see a mountain growing...it is sad...and that alas is why so many older people seem so depressed and down in the mouth, as the saying goes.
posted by Postroad at 6:22 PM on May 21, 2012 [16 favorites]

My dad died a perfect death. He was 86, still living in the home he had lived in for 45 years, still able to drive and enjoy his activities when one friday night he went to bed and just didn't wake up. He had been living with congestive heart failure for a long time and his heart just stopped. It was a shock and I miss him dearly but I am so very grateful that he died this way. I know he was worried about what he would do when he could no longer be independent and I can't imagine any way for him to die that would have made him happier. I can only hope that I can give this gift to my children, to die without being a burden. My heart goes out to those living this long death of a loved one.
posted by bluesky43 at 6:31 PM on May 21, 2012 [8 favorites]

Is there any evidence that this woman, who enjoys family visits, communications from friends and some moments of mental clarity, actually wants to die?

As someone who spent every bit of the ten years before my beloved grandmother's death wishing and hoping she would die, I suggest you re-read the article. Specifically any part that talks about her anger. When you re-read, you'll see she's angry to be ALIVE.

There is a dignity and solace in death that demented patients seem to long for, though who the fuck can really tell in the end? I don't think this guy's a saint (he glosses lightly about divorcing his wife after cheating on her with another woman, but it's there) but I understand where he's coming from.

There is no pain I've yet experienced like watching a wise and loving family member turn into a piece of furniture--worse, a smelly piece of furniture that nobody will mind putting out at the curb on trash day, may that day come soon (I'm not going to gloss over my failures either). It is because there is love and devotion present that people so dearly want their loved one's suffering to end.

I lost one grandparent to dementia and a soiled sort of decrepitude and the other to a stroke that caused them to fall asleep and never wake up--it was the one everyone wished the best for that died in decrepitude, ironically enough. You learn at some point that the worse horror is too much care, not too much neglect.
posted by librarylis at 6:32 PM on May 21, 2012 [12 favorites]

On Sunday I attended the memorial service for my father-in-law's younger brother, who was 98. He suffered very little in the way of health issues even to the very end. The day before he died, he asked that one of his sons drive him to visit my father-in-law, then he returned home, had dinner, had a shot of tequila as was his custom, watched a little TV, went to bed, and passed away in his sleep. During the service, which was the most joyous memorial I've ever attended with children, grandchildren and great-grandchildren crowding the podium to share their fond remembrances of him with far more smiles than sorrow and in marked contrast to so many other memorials I've attended for elder relatives who died well before their bodies finally died. I realized that the big difference was because he had a great death. It was an awesome death, actually and it's really strange to realize that having an awesome death is not a norm for our society as we typically do not look as death as healthy when in fact, it can be.
posted by jamaro at 6:35 PM on May 21, 2012 [26 favorites]

She refuses to accept that she's dying, as do her family members, and they are essentially bankrupting themselves to keep her alive a little longer, in terrible pain and great fear -- because, after all, it's possible. This is being termed a "miracle." I think it's an absolute tragedy.

If she wanted to die and wasn't allowed to, I'd agree. But she wants to live according to what you are saying. I don't think it's reasonable to ask people to kill themselves / stop medical assistance if they don't want to.

In reality, I think its hard to know ahead of time what one will want. My current guess is I'd rather be alive and in pain than dead. But I imagine the exact nature of such might make a difference, and thus any sort of advance directive is tough.

But I certainly hope no one decides I don't deserve to live anymore if I want to. I want every second of life I can get.
posted by wildcrdj at 6:46 PM on May 21, 2012 [4 favorites]

I'm still young and I understand that I have quite a bit of time, but I also have a high-risk for schizophrenia and dementia. I've spent a decent chunk of time giving this serious thought, and have planned how I want to die assuming that I am afforded the opportunity and that I actually notice any symptoms.

If both of the above factors are true, I would prefer to ensure that my affairs are in order and that my friends/family are all taken-care of. Then I'm going to try and find my way to the wild with a handgun/razor/bottle of pills.

I don't want it to be a sad death, and I'm never going to hide this desire from friends and family. I just want to die on my own terms.
posted by thsmchnekllsfascists at 6:48 PM on May 21, 2012 [5 favorites]

I suggest you re-read the article. Specifically any part that talks about her anger. When you re-read, you'll see she's angry to be ALIVE.

That didn't come through to me at all. She's angry at not being able to retrieve the right words, maybe. That doesn't mean she wants to die.

Most of what he writes about her suffering is remarkably nonspecific; apart from a passage on her diaper-changing, it's just the implication that of course a formerly healthy person with a severe disability is suffering enough to want to die. The parts about his suffering, though, and his distaste for the situation, are highly specific. The awful furniture for people with disabilities! The cost to the taxpayer!
posted by Ralston McTodd at 6:48 PM on May 21, 2012 [1 favorite]

It might have been real life or it might have been fiction, but there was something I read about hunting the biggest deer in the forest.

If I get to know ahead of time that its coming, I'll not come back in until I've found that deer.
posted by Slackermagee at 6:49 PM on May 21, 2012 [1 favorite]

I just hope by the time I hit the dementia years, assisted suicide is finally legal...well, at least in my state, 'cause I probably won't be able to afford Dignitas and I don't know if I'd get up the nerve to DIY that.
posted by jenfullmoon at 7:01 PM on May 21, 2012 [1 favorite]

Despite basically agreeing with its point, there are two hinky things in this article for me -- first off, I'm getting a weird whiff from the author. There are some weird little throwaway stats about how old poeple often have multiple disabilities, which is true, but not actually a reason to euthanize them. It kind of creeped me out.

Second, holy shit, the healthcare costs in the US are INSANE. I sometimes have a vision of the US as a gigantic, well-oiled machine designed to separate working people from their money, and this is yet another perfectly designed little aspect of it, whereby the desire of children to not see their parents die somehow becomes a money pump by which taxes can be siphoned into the pockets of healthcare corporations and, ultimately, Wall St.
posted by unSane at 7:10 PM on May 21, 2012 [11 favorites]

It was an awesome death, actually and it's really strange to realize that having an awesome death is not a norm for our society as we typically do not look as death as healthy when in fact, it can be.

Healthy for the people left behind, maybe. I don't think there's any way the definition of the word "healthy" can be stretched to cover dying.
posted by adamdschneider at 7:10 PM on May 21, 2012

If we ever met, I think I'd probably punch Mr. Wolff in the face.
posted by Kevin Street at 7:16 PM on May 21, 2012

My family is going through this right now with my great-grandmother. She is suffering. Her dementia makes her unable to recognize most family members. She spends half of the day, literally, screaming, that she's being attacked, that people are kidnapping her, that they've stolen her babies. She can't recognize any of us at the age we are now, and those of us who were born after around 1950 only exist as nice strangers.

She had a rare lucid day the other week. She told me that she was so tired, and in so much pain, that she'd lived enough already. Then the lucid moment passed, and it was back to indignity and screams.

My other great-grandmother passed away at the age of 105. She lost a leg, and had to be supported by others-and at that point, started asking, almost demanding, to die. "I want to die in my own bed. Please let me die in my own bed."

But she couldn't. Because nowadays, if you let an elderly person die when they could have been saved by modern medical treatment, you can be liable for elder neglect.

I currently have an agreement with a friend that if I get to a certain state, they are to kill me, straight up, no waiting around for me to be able to assist myself, if they are able to do so. Because that is incredibly awful. And the idea of my children having to drain what money they have taking care of me is equally awful.

Dying is healthy, when living is worse than dying.
posted by corb at 7:17 PM on May 21, 2012 [10 favorites]

But she couldn't. Because nowadays, if you let an elderly person die when they could have been saved by modern medical treatment, you can be liable for elder neglect.

This isn't even remotely true, or at least I hope it's not, because it sounds like nonsense, it must be, right?

What with DNRs, hospice and home care. Good doctors know when to say enough.
posted by IvoShandor at 7:21 PM on May 21, 2012 [1 favorite]

Good doctors know when to say enough.

The problem, as far as I can tell, is that it doesn't take just one voice to say "enough". Everybody has to be on board. If even a single person objects, they can raise doubt and hell and cause legal problems far beyond the scope of their moral involvement.
posted by grog at 7:34 PM on May 21, 2012 [4 favorites]

This isn't even remotely true, or at least I hope it's not, because it sounds like nonsense, it must be, right?

IANAL, but IME it depends on the state. Also, home-care/hospice treatments usually aren't free or accessible to lower income families.
posted by thsmchnekllsfascists at 7:34 PM on May 21, 2012 [1 favorite]

I don't think there's any way the definition of the word "healthy" can be stretched to cover dying.

I completely and thoroughly disagree. Another anecdote to illustrate. My mother developed brain tumors, four of them in inoperable locations. They responded a little to chemo and a little to radiation but they continued to grow. As they grew, they crowded her brain, at first giving her violent seizures, then robbing her of her ability to walk, then stand, then speak and think and see and at the end, denied her the ability to swallow. She was brain dead for 18 months, on a stomach tube, insensate. Was she healthy? No. Was she better off dead, by any standard we understand? Yes. She could have died a healthy death much earlier and while she was still able to talk expressed her desire to do so but wasn't able to go through with it herself nor find the support she needed for someone else to end her life for her.

If we, if our society understood and supported people like her: someone who knew the end was coming and it wasn't going to be a happy end preceded by a shot of tequila and an episode of Fringe, then she would not have suffered for as long as she had. If she could have chosen her own exit in a supportive, pain-free environment surrounded by loving care, she would have taken it.

Her last words to me were, "kill me." I couldn't do it.
posted by jamaro at 7:36 PM on May 21, 2012 [15 favorites]

Jamaro, I am so sorry.
posted by clever sheep at 7:38 PM on May 21, 2012 [7 favorites]

IANAL, but sometimes despite DNRs, the emergency crews will have no choice but to attempt to resuscitate a person who is down.
posted by Issithe at 7:43 PM on May 21, 2012 [2 favorites]

Can't finish the article. Fully support assisted suicide. I don't see the point of keeping someone intravenously hydrated just so they can lie there, choking on the fluid in their lungs. It's torture.
posted by bonobothegreat at 7:43 PM on May 21, 2012 [5 favorites]

If she wanted to die and wasn't allowed to, I'd agree. But she wants to live according to what you are saying. I don't think it's reasonable to ask people to kill themselves / stop medical assistance if they don't want to.

I don't think she should stop medical assistance if she doesn't want to, either; this is most certainly her choice. That's not the tragedy.

The tragedy is that the artificial prolongation of one's suffering -- and make no mistake, that is primarily what's happening in cases like this -- is now both medically possible and culturally/socially elevated, all in the name of "battling" cancer (or whatever the ailment is) and, by extension, battling mortality itself.

The tragedy is that people can now exist in great pain and suffering for months, years, decades more than they would have even just a generation ago -- and almost invariably at great emotional, personal, and financial cost to loved ones. Countless families are now quite literally devastated on multiple levels by this sort of "progress." And it's not even a matter of necessarily "choosing" to live an extra 20 years in horrible pain; it's now just sort of built into medical science. And yet, how many states allow the right to die? How many doctors talk to their patients about living wills and DNR orders? Remember the utterly specious "death panel" hysteria just a few years ago when it was suggested that it might be a good idea to bring in some federal guidelines so that Medicare doctors could speak about these basic issues with their elderly patients?

This is all predicated on an almost infantile denial that WE ARE ALL GOING TO DIE. Whether it's peaceful or whether it's kicking-and-screaming... well, there's no getting around it. But what's become increasingly difficult is for people to experience what was correctly termed above as a good death.

The tragedy is that our culture has made an enemy out of the wrong thing. The enemy is not dying. The enemy is dying painfully and fearfully.
posted by scody at 7:43 PM on May 21, 2012 [36 favorites]

The enemy is not dying. The enemy is dying painfully and fearfully.

The real enemy are those that would begrudge you that choice.
posted by thsmchnekllsfascists at 7:54 PM on May 21, 2012 [7 favorites]

I'm 32. Both of my parents are gone. My mom died 21 years ago, and my dad died almost a year ago. Mom died at 45, from skin cancer. Dad died at 71, from a heart attack. He was a bio-chemist, and took immaculate care of his health, had great vitals, passed all his tests, and went from grocery shopping at Whole Foods on a Saturday afternoon, to dead in 30-45 minutes.

I am, I admit, relieved that he died very quickly and relatively painlessly. As shocking and sudden as it was, given him being a health nut and very independent, compared to watching my mom deteriorate, with tumors poking from her thin frame this way and that. Being a caretaker starting in the 4th grade. Seeing her immense suffering and (as is not often discussed by caretakers) suffering a lot myself. I am very, very relieved to not have to go through that with my dad. It's not apropos to admit. I do miss him, but I do feel relief.

I made the decision when my mom died, that unless the chances were very strongly in my favor, I would not do anything to prolong my life, if put in a similar situation. For me, it's a simple matter of choosing to value quality, over mere quantity of life. The latter is becoming pretty easy to come by - the former is so much more precious.
posted by raztaj at 7:56 PM on May 21, 2012 [8 favorites]

Please have you and your loved ones fill out advanced directives that give you autonomy over your end-of-life decisions, so some of the horrors described above can be mitigated.
posted by lalochezia at 8:00 PM on May 21, 2012 [8 favorites]

For decades, whenever the conversation arose about "pulling the plug" (because that's how we used to refer to any end-of-life issue), I was firmly on the side of, "I don't care what it takes, you leave me plugged in! LET IT BE KNOWN THAT IF I'M JUST A HEAD IN A JAR HOOKED UP TO MACHINES, YOU LEAVE THOSE MACHINES PLUGGED THE HELL IN!" Almost in a joking way, but very serious, too, you know what I mean?

Then my partner's mother developed Alzheimer's, and I have reconsidered. Sweet MeFites, if by some strange twist of fate it should ever become your decision, take me to a pretty spot in the woods on a blustery day and let me die of exposure, s'il vous plait.
posted by infinitywaltz at 8:44 PM on May 21, 2012 [2 favorites]

Just about to go to bed, and this shit scares me. I grew up with my mom going to Wisconsin Right to Life meetings and I had attended a few and saw the propaganda. This was in the 80s and apart from the main topic of abortion, euthanasia was also brought up (usually along the same fearmongering tactics of genocide that they use with abortion (though in this case, I guess it'd be more gerontocide)).

When you grow up in that, and you see the "death panels" talk, you see what that steady drumbeat of propaganda on the right-wing has done to half of America. Add in that this half of America is the one that tends to be on the older side of the hill (not all, of course).

My parents... My dad just had his birthday and I didn't call, cuz I forgot then I realized and I wanted to today, but was so drained of energy and just depressed in general, that I didn't. And I'm visiting this coming weekend, thankfully. He had a heart attack w/a double bypass (I think it was double) Anyways, he's survived since the mid 90s, out of work mostly, doing odd chores. My mom was the main breadwinner since then, and she's getting old and frail. She's had hip surgery. Dad's eyesight is failing. Mom's cholesterol is going up up up. Sounds like she had a TIA at one point. Many health problems every time I call.

I was shocked when mom said to me, after her TIA, and the cholesterol news that "I'd rather die of a heart attack than have a stroke" because that did NOT match all the propaganda I was brought up on, and seemed to violate that whole idea. I mean, sure you don't want to suffer, but I dunno...

I don't know where I"m going with this. My parents are getting old. We do not have ANY money. I'm lucky if I get a few hundred in savings and then it seems to go to a broken down car or whatever. I'm trying to get things that I want/need in the process. I make decent money - not rich, but not poor. My folks... They subsisting on Social Security, and I feel I should start to help them a bit. I don't know what's going to happen if they don't pass. I can't afford full time care, I don't think they have much insurance in that regards. My mom's dedicated the past 20 years to helping elderly people in their house (general caretaking overnight), and it scares me to think that she still does this now and then, and she's 70 years old herself. And that's how she has to support herself. And why the FUCK are we not hiring youth, and lowering retirement age so people CAN live happy lives near the end instead of fucking struggling and busting ass, while the employment market is fucked and goddamn you Paul Ryan you fucking piece of shit asshole and your right-wing "sanctity of life" followers who get fucked over every second of the day because of your blackhearted ideology that pretends it is based on love and humanity but does nothing but destroy dignity with a black hearted malice that feasts upon life in the worship of a god of greed.

(woah, where did that come from).

Anyways. *hold me*
posted by symbioid at 10:46 PM on May 21, 2012 [9 favorites]

posted by de at 10:56 PM on May 21, 2012 [1 favorite]

I'd just like to mention that Medicare part A covers 100 percent of hospice, Medicaid also covers hospice entirely. Being low income in no way means that you will not qualify for hospice. Get a DNR, get an advanced directive BUT also designate someone you really really really trust to follow through on your health care wishes as your DPOA. That may not be your spouse or your child but if you do not do this, then yes, a family member can contest hospice/DNR or really anything they want. Also, a DNR won't stop you from getting CPR and hooked to a vent if you go down in public but having a DPOA who can say enough is enough can end that. And I may be hugely biased but I firmly believe in a good, healthy death as a very real possibility, even with dementia.
posted by yodelingisfun at 11:23 PM on May 21, 2012 [3 favorites]

I'd just like to mention that Medicare part A covers 100 percent of hospice, Medicaid also covers hospice entirely.

This is true, but it's not the whole story. "Hospice" means care from nurses, personal care attendants, chaplains, etc. but Medicare does NOT cover room and board, even for a residential hospice facility. For families who cannot afford hundreds of dollars per day (yes, per DAY) for a nursing home, their only option if they want hospice care is to bring that family member home. This is a person who will require 24/7 care from their family members, because hospice staff only visits the home for maybe an hour a day tops. People have to choose to go bankrupt trying to pay for a nursing home vs. going bankrupt from not being able to go to work, because they have to stay home with that ailing parent. Someone has to be there to change the diaper, to fetch a glass of water, to administer pain medication, to turn the person every few hours so they don't develop bedsores, and for the majority of families who can't afford a nursing home, these responsibilities fall on the family members.

I've seen patients and families choose to continue treatment, even though they know there's no hope and the patient's quality of life is nonexistent, because they can't afford a nursing home, and they can't afford to have Mom or Dad at home. Because if they keep pursuing "curative" treatment (even though everyone knows it's futile) in the hospital, Medicare actually does pay for the 24/7 care.

All this is not to disparage hospice. Hospice is a godsend. But there is sort of a bait-and-switch thing going on where people hear "Medicare pays 100% for hospice" and it doesn't mean what they think it means.
posted by vytae at 11:37 PM on May 21, 2012 [15 favorites]

So incredibly depressing and terrifying. From a purely scientific standpoint, is there any evolutionary reason our bodies tend to outlast our brains? (Or do they even, on average?)
posted by gottabefunky at 11:42 PM on May 21, 2012

No you are absolutely correct, Medicaid and VA will pay room and board but in general Medicare will only pay for hospice room and board for short term crisis care or a 5 day respite. It will however pay for all durable medical equipment, all medications related to diagnosis and comfort and intermittent nursing which includes CNA. It's definitely been an issue for a lot of my patients and the options can suck but keeping someone in the hospital isn't so great either and here at least they will get to work booting you out if at all possible. Nursing home care here runs 6000-8000 month, ASL is 2000-3000+ and hiring a caregiver runs around 16 an hour, so yeah it's tough. A good hospice will have MSW's to help but there is no magic answer. Group homes in Vegas can almost always be found that will accept whatever SS someone has but they are often sort of gross.
posted by yodelingisfun at 11:49 PM on May 21, 2012 [2 favorites]

I kind of wish we had death panels when I read things like this. I don't want to see my parents or my other elderly relatives in this state, but I'm not a medical professional and I have absolutely no idea when it's appropriate to stop treating things. I don't think that's a power over another's mortality that I can really wield comfortably. I don't want to have to be the person to look at the costs and decide whether it makes sense to keep trying, and I don't feel like as a society it's fair of us to ask children to do that for their parents. The reason all these old people are being kept alive well past the point where they're suffering more than they're enjoying it is that nobody wants to take responsibility for making the call. And everything about many segments of American society teaches us that it's a reprehensible call to make, even when evidence to the contrary sits right in front of our faces, in the form of the aging relatives we can't allow to slip away. Even when it's so clear that they'd prefer it, even if it hurts us to look, we can't make the call, in so many instances, or we don't have the power to make the call even if we wanted to.

I don't want this to be a choice that we have to make about people we love - in many cases, the very people who gave us life. Technology has made that choice possible, but I don't think it's good for our humanity. I think this is something where we really need a committee, or a big old actuarial table, or something - something to take this out of the hands of the most concerned parties and the medical professionals who stand to benefit.

By the time my grandfather passed away, he was making fond jokes about death almost constantly. And he was in relatively good health - able to walk and move around, able to work in the sun - up until his last couple months, even though his hearing was going and his memory wasn't what it once was. He made it very clear to us that he would welcome his own demise - to the point where I think we all knew if we tried to keep him alive past his time he'd find out somehow and get us back. Most elderly people are not so clear on their preferences - or by the time they know they want to die, it's too late to communicate it clearly.
posted by town of cats at 11:52 PM on May 21, 2012 [2 favorites]

One thing that really stood out to me in the article, which I see fairly often as an oncology nurse, is the poor communication between medical staff and families. Everyone is dancing around the topic of quality of life, and whether an invasive intervention is really worth it, because they're not comfortable discussing it, and patients suffer for our lack of bravery. The author of that article talks about hating the metaphors, and wanting to be really clear, but then says to the doctor "How do we get from here to there?" That's not clear. Clear is "Mom is suffering. We don't want to do anything to prolong her life any more. She will not have surgery. She will not take medications that are meant to prolong life, whether they're antibiotics or anti-seizure meds or blood pressure drugs." In the conversation he describes, you can hear the doctors and the social workers skirting the issue, partly due to their own discomfort and sense of failure (which is inherent when someone dies, even someone who is 80-90-100 years old), but partly because they don't want to offend the family by being too blunt. It's agonizing, and it happens all the time.

The thing is, nobody teaches us as family members how to be really clear and stand up for our loved ones at the end like this. Despite the increasing awareness that quality of life is often more important than quantity at the end, people still feel a sense of shame or guilt in wanting to let their loved ones die. It's a million times worse when the family doesn't have a clear sense of what the patient would have wanted, when the patient is too far gone to speak for him or herself, because nobody wants to let Mom or Dad die if that's not what they wanted. We still err on the side of life, even when enormous suffering is involved.

That makes it imperative that we learn to have these conversations with our parents, our spouses, our children. Talk about what makes life worth living for you, and about what would push you to a point that you wouldn't want to be kept alive anymore. Appoint a legal healthcare power of attorney, and make sure they know and understand your wishes. Write up a healthcare directive that specifies your wishes to help make them clear, and give copies to all of your doctors. If you see yourself at the top of that slippery slope of decline, look into getting a POLST form, which is the only thing that will stop EMTs from trying to resuscitate you if you collapse outside a hospital. Push your elder relatives to have these conversations with you or someone else they trust, for their own benefit in having their wishes followed, and for your benefit when you're forced to someday make decisions for them. And most of all, don't be afraid to tell it like it is to the medical staff caring for you or your family. They may dance around the topic of stopping treatment, waiting for you to bring it up, so unfortunately it falls onto the patients and families to say "enough is enough."
posted by vytae at 11:52 PM on May 21, 2012 [13 favorites]

Reminded me of this earlier post here on the blue.
posted by athenian at 12:05 AM on May 22, 2012

As an outsider, one huge problem I see with the end of life medical debate in the US are the huge financial incentives there are for keeping people alive as long as possible on the part of the medical/insurance industries.

Here in the Netherlands we do have euthanasia laws, fortunately and, at least in my own personal experience, medical people who are trained and willing to take quality of life issues seriously.

My wife died late last year after stopping treatment, having spent most of the two years before that in hospital recovering from the various side effects of a succesfull kidney transplant and the year before that on dialysis and getting weaker. After her last bout with infection, she decided she had enough, wanted to stop treatment and did. It wasn't easy, it never would be easy, but from day one her doctors took her wish seriously and helped her get everything sorted, made sure she was sure and then stopped all treatment except that which was needed to keep her pain free.

She got to get her son over to spent her last few weeks with him, she got to get her final meal (proper roast with all the trimmings courtesy of an English pub, who were kind enough to give it to us for free), she got to spent her last days in relative comfort in hospital not having to bother with all the horrible medicines she had had to take and finally she got to pass away quietly in her sleep, with her son holding her hand.

Because Sandra was a smoker, and all the smokers in the hospital (including most of the nurses) had to huddle together in the one corner of the parking lot where it was permitted, she got to talk to a lot of people during her stays there. One fo which was a woman whose father was in hospital and unlikely to get out of it. He chose active euthanasia and the relief in that woman's voice when she told about how he no longer needed to suffer was clearly noticable.

It's that ability to decide for yourself whether or not further treatment is worth further suffering, whether or not it you think you'd be better off dead than in more pain is what gives peace of mind to people with long term and/or terminal illnesses. Before these laws were passed all the worry was whether or not some people might not be forced into euthanasia, but it's clear the much greater problem was all those people who desperately wanted to die, to end their pain, but couldn't.
posted by MartinWisse at 12:14 AM on May 22, 2012 [20 favorites]

There's a lot of honesty, emotion, and pragmatism here. A rare point of light in a dark and difficult debate.

The article from February 2012 – How Doctors Choose to Die provided a strong justification for my own feelings on the matter. In essence, the article notes that doctors do not take every measure possible to save themselves. They understand the implications of what 'every measure' means, and how there's a distinct difference between 'quality' of life and 'quantity of life'.

Doctors quickly make peace with the difference between 'desirable' end-of-life outcomes and 'possible' end-of-life outcomes. Yet, the distinction for the rest of us is not quite as clear. There's a tremendous fear of giving people control over life and death, thus the default is for medical professionals to extend life, regardless of costs. With good reason, for there is no general rule. Some individuals and families very well may want to go for 'quantity' of life, whilst others may want to go for 'quality' of life.

The key problem at the moment is there's not really ways to opt for 'quality' in the current system. There's the basics, like DNR orders, however assisted suicide – at least in the US – is a big no-no. Thus, if one is already dead, they can be asked not to be brought back to life. But if one is alive, they cannot be asked to end their life.

And it's a huge and nuanced issue. There are the sinister elements – financial incentives to keep people living long after they are comfortable or functional. Payments for elder care are tremendously profitable across the entire medical value chain. Typical moral hazard problem, where the benefits are often seen by private companies or individuals, with society at large footing a lot of the cost.

Then there are the spiritual elements – some traditions celebrate death, whilst others see suffering as part of life. In the latter case, life must continue as long as possible, regardless of suffering, for suffering is redeeming.

There are the social elements – Suicide is a grim indicator of economic and social problems. When markets crash in India, indebted farmers turn to suicide. Workers at Chinese factories throw themselves off rooftops to protest working conditions. Monks immolate themselves in the face of tyranny. Impoverished suicide bombers make a statement with their lives, often for money for their families. With laws and rules that blanket-prevent suicide of any form, the result is that people continue to live in emotional and/or physical distress. No being should wish for the end of itself, thus if someone does with for the end of themselves, it is an indication that death is preferable to suffering, whether that suffering is physical, emotional, mental, social, etc.

On the macro-level, there are serious implications for right-to-die movements. Often, suffering brings people together and teaches life lessons. In caring for an elder at the end of life, many younger people learn about the process of life itself. Proximity to suffering develops empathy, and is an opportunity to pass along tradition and knowledge.

I've known several non-spiritual individuals who were freewheeling through unencumbered existences when the illness and suffering of a parent or other elder made them stop and learn about a different side of life, about death.

That's not to say the suffering of the elderly should be a tool by which we teach moral values, but rather to indicate that the issue is so finely nuanced, it will be difficult to find blanket rules for these matters.

Part of it probably has to do with how we treat death as a society. Often, I think, we are terrified of it. So terrified that we developed various concepts of an afterlife, so that death is not an end-point, but a transformative point – when we become something else. I cannot presume to know if an afterlife exists or if an afterlife does not exist, however it is obvious that we fear death.

Especially in the Western world, we have done a tremendous job of vanquishing death from our lives. American cinema plays with the theme constantly, for we have developed the capability as a society to control death to a greater degree than developing nations, for instance. In a place where death is part of life, one does not need to go to the cinema to connect with death. Thus, art becomes an escape from the very real deaths occurring in life. If death is not part of life, it can become a tool of fiction, a symbol.

And we have done well in banishing death in the Western world, and to the benefit of the world at large. However, we cannot escape death and in banishing death, perhaps we have gone too far in some ways. We have removed a place for death as part of life, thus the suffering of individuals kept alive, in a place between life and death. They are kept alive by artificial means, not for their benefit, but rather for ours. And again, it's tremendously nuanced, for the profitability of that industry leads to the development of tools that help everyone, not just the elderly. Thus, there is a net positive benefit to the society to prolong life. But we must find a balance between the benefit to society of keeping people alive and the tremendous costs of suffering to individuals and families.

And I do not speak solely from a philosophical point. I have watched and am watching tremendous men fall in the face of dementia. Men who proudly fought wars, raised families, and helped build companies, felled by the demise of their minds long before their bodies. In a different time, their bodies would have failed long before their minds, stolen by heart attacks or cancers. But now, those physical maladies have been overcome, and their bodies march on as their minds wear thin. They are alive, and they are vital, but they do not have lives. They have neither presents nor pasts. They do not have futures. Their experience is one of a constant moment in which everything is changing around them, and they do not understand. They are terrified. They hide behind masks of known behaviours – rote learning – which leads to bizarre interactions with the world around them, for they are simply acting out of habit, not reacting to anything in particular.

They are burdens to those around them without even being aware of it. They act inappropriately, violently, impulsively. They are helpless and disconnected, unable to even make the most basic of decisions for themselves as they handed over power of attorney a long time ago. They live off fixed payments from a variety of income programmes, private and public. The workforce toils under increasingly onerous conditions to support the lives of these men that can no longer function.

Yet, would I end their lives? Would I make the choice to push a button or sign a form and cast them off? No. And then yes. There is a point, when confusion dominates and they are walking down the road of increased morphine doses. Now they live in a haze, generally sedated. Occasionally, their mind reels in lucidity and they become frightened and violent. They are suffering to a degree to which perhaps it is time to free them from their cage of life. I have watched the forms be signed, watched the aftermath that occurs to the living person that must give away their partner. It destroys a piece of them forever; a divot of weight and sadness that will remain.

And thus, like the author of the original article and some of the comments here, I would like a structural approach to the matter. A way that each individual – in times of full presence and awareness – can define their path. We already have very strong policies to do this financially; now we need that same type of planning for medical care and ending our lives. Yet as long as we deny death and see death as 'bad', we cannot get to such a state, for we are operating in a reactive state instead of a proactive state.

I hope this is something that will change in my lifetime. And I think there's a lot of unwarranted fear, that if the mass population was given the right to assign their end of life options, the majority would choose to extend as long as possible, far beyond their own means and encumbering society as a whole. I do not think that is what would happen. If you gave people the choice between ending their lives either with dignity or to a grim extreme, I think most would choose the former. They may not remain in favour of that choice when the time comes, however, I think most of us would want that for ourselves. A gentle, humane send off. Something controllable and painless; something where we can say our goodbyes, and truly go in peace. I cannot fathom one would choose a hellish life of confusion and terror over an option.

Thus to conclude, perhaps we must put at least some modicum of equivalent effort into our efforts to die gently and with dignity, as we do into prolonging physical life as long as possible, and at all costs.
posted by nickrussell at 3:21 AM on May 22, 2012 [1 favorite]

Yes. Medicare doesn't pay, and Medicaid does, which is a weird thing, so you see a lot of elderly people trying to transfer their property away before they get dysfunctional, and taxes on giving not making it easy. The bar is I think 7,000 in real property and savings, which doesn't actually go very far. I didn't know that the VA did pay for room and board-that's actually encouraging.

What I am learning from this discussion is that in my later years I need to move to the Netherlands if the US hasn't gotten its head out of its ass yet.
posted by corb at 4:20 AM on May 22, 2012

Let's not forget to hope, and call for, a cure/effective prevention of Alzheimer's and other diseases of old age.
posted by Segundus at 4:55 AM on May 22, 2012 [1 favorite]

Let's not forget to hope, and call for, a cure/effective prevention of Alzheimer's and other diseases of old age.

Why?? That's the last thing we need. Humans as this article makes perfectly are not immortal. Let's find an effective wary of dying, not just prolonging life.

If I had my way, I'd end up here either eaten by a zombie or shot by friends. Life comes to an end quickly here.
posted by Xurando at 6:06 AM on May 22, 2012 [2 favorites]

So incredibly depressing and terrifying. From a purely scientific standpoint, is there any evolutionary reason our bodies tend to outlast our brains? (Or do they even, on average?)

They don't, or rather, they haven't for much of human history. We've figured out how to tackle and manage a lot of illnesses/injuries that would previously be a death sentence at an early age- cancers, heart attacks, serious injuries from fire & explosions, etc. Now we have to figure out how to manage the illnesses that come next- Alzheimer's, dementia, ALS, etc.
posted by ThePinkSuperhero at 6:21 AM on May 22, 2012

My husband and I are coping now with his ninetysix years old mother, who, until a few months ago, was active and capable in assisted living. A broken wrist forced her into a skilled nursing facility, where she was given an antipsychotic for a supposed depression. The medicine gave her hallucinations, (a well known side effect for the elderly in that particular prescription), developed pneumonia, was hospitalized and ended up incapable to stand or walk, and with a MRSA urinary tract infection. Now she is in a nursing home, incontinent and unable to do anything for herself.

Since then, I made very clear to my husband, children, and doctor that if I am ever incapable to order from the pharmacy my various prescriptions for my various chronic ailments, if I'm incapable of sorting my prescriptions and taking them properly, I want to stop all meds. I refuse to live that way.
posted by francesca too at 6:29 AM on May 22, 2012 [2 favorites]

One thing that really stood out to me in the article, which I see fairly often as an oncology nurse, is the poor communication between medical staff and families. Everyone is dancing around the topic of quality of life, and whether an invasive intervention is really worth it, because they're not comfortable discussing it, and patients suffer for our lack of bravery
In the conversation he describes, you can hear the doctors and the social workers skirting the issue, partly due to their own discomfort and sense of failure (which is inherent when someone dies, even someone who is 80-90-100 years old), but partly because they don't want to offend the family by being too blunt. It's agonizing, and it happens all the time.
- posted by vytae at 7:52 AM

This rings very true to me.

My mum died of cancer in hospital after years of struggle. The dying-in-hospital part was brutal and awful but I have always been thankful that it was at least a relatively short part of the process. She went to sleep one night and never regained consciousness, but she was still alive for a while. The doctors were giving her fluids etc and one day I asked why she was bloating so much and they told us that her body could no longer process the fluids so they were just sitting in her body causing her to bloat.

This seemed preposterous to me and my brother so we told them they should stop, I mean, if it's not helping, what's the point right? The thing is, at no point did anyone say to us, "we're continuing to give her fluids as this is what is keeping her alive, she will die anyway but this way it will take longer" and I didn't really think about it that way either. I just figured that this thing they were doing wasn't working so they should stop doing it. My father was devastated by this because (in retrospect I realise) he saw it for what it was, we were 'pulling the plug'. I've never really forgotten how I didn't clearly see what we were doing at that point due to lack of communication. I still believe that we made the right decision, I just think it should have been made more clear to us what that decision meant.

I think it's a real tragedy that were not encouraged to discuss death with our families, I remember coming to the hospital unannounced after work one day and I found my mother, who was normally such a pillar of strength and positivity, just sitting alone in her hospital bed sobbing. She was sad and scared and she didn't feel like she could talk to me about it, which was heartbreaking to witness. Then following her death I was repeatedly reprimanded for saying that my mother had 'died', people didn't like that, the local paper refused to print it, according to them she 'passed away'. Everyone speaks in euphemisms about death because no one wants to acknowledge that it will happen to them and their loved ones but it will and not speaking about it just makes everything so much worse when it does, because we have no language with which to communicate to each other about it.
posted by rubyrudy at 7:18 AM on May 22, 2012 [3 favorites]

My 75 year old mother is terrified of dying.
Right now she is in a morphine haze, having been put on it Friday. Haze is not the right word as the morphine seems to be tormenting her, and she is having terrible nightmares and hallucinations. She was in denial about dying and telling us how frightened she was of death before the morphine, Now she is pounding the wall of her hospital room with her fist, and screaming for someone to help her, but unable to articulate any more than that. This effort is from a woman who is 80 pounds and unable to leave her bed or even feed herself-the feeding tube went in a few weeks ago.
This is the best that can be offered her at this point.

She was diagnosed with terminal cancer in March. She underwent palliative radiology to eliminate the pain from the tumor that is wedged between her chest muscle and the wall of her right lung. It helped temporarily. The cancer spread to her brain about a week and a half ago, and the confusion started. She was lucid most of the time, though, just confused. The pain returned however, and after going through several increasing strengths of pain killing drugs, the final stage of administering morphine.

Since her diagnosis I've made the seven hour drive between NYC and her western NY town several times. Last time I was up there, sitting next to her hospital bed, I was reading on metafilter about hallucinogens and terminal cancer patients and the positive effects that they have with patient outlook and acceptance of death. I wish that it were some time in the future and we could give my mother this treatment.

She is also still fighting this emotionally. She is not ready to die, but she is going to die soon. There seems to be nothing we can do to help her accept this fact and be at peace with it.
Her short term care policy runs out July 6th, and none of her care providers see her making it that long. For her sake, I hope that she doesn't. It's a miserable way to live, both physically and emotionally. I only hope that she is able to come to terms with her death before it happens.

Sitting there and dealing with the nursing home, the hospital, the oncology center and my mother's luck of having excellent insurance and the extent of care she receives as a result also scares me for my own future. Death itself has never scared me, and of course it's easy to sit back and say that when/if the time comes I want death by helium, but will I actually be able to go through with it? Will I even be in the position to do it or have someone else do it if necessary?

My fear is having to go through the same horrific process that my mother is having to go through now..afraid, helpless, and in pain.

I guess I don't have much of a point in this rambling comment except to say that the way that we currently think about and deal with death as a culture seems barbaric on many levels.
posted by newpotato at 8:57 AM on May 22, 2012 [1 favorite]

For anyone who's curious, the most pain-free, mess-free, illegal-substance free path may well be asphyxiation through gas.

Your body's suffocation reflex is activated by high CO2 blood levels, which can result from too little fresh O2, or too much CO2. However, if you breathe in too much nitrogen, or helium, or laughing gas (NO3), your body doesn't overproduce CO2 (as it exhales what's already in your blood), and your O2 levels drop.

You fall unconscious without ever realizing you were leaving the awake world.

This is why areas with gas supplies - N2 feed lines, for instance - have to have oxygen monitors. Humans simply won't realize they're dying from a leak, elsewise.

CPAP machine in a garbage bag filled with the gas. Done. Painless.
posted by IAmBroom at 9:46 AM on May 22, 2012 [8 favorites]

She is not ready to die, but she is going to die soon. There seems to be nothing we can do to help her accept this fact and be at peace with it.

May I respectfully suggest that open communication can sometimes help with acceptance, too? It's not true for everyone, but a lot of people at the end of life are freaked out about all the things they didn't get to do, and whether their life was worth it. Having a conversation about, "Is there anything you wish you had done, or still want to do with your time left?" can help someone process the fact that they won't get to do some things, and can also help you facilitate the achievement of the more realistic goals. Help someone get in touch with so-and-so that they'd always wanted to say X to. Bring them that food they never got around to trying. If they regret never going to Paris, bring croissants and french movies and berets. Not only does this kind of thing help somebody cross things off their bucket list, it also shows them that YES - their life did matter, because they developed relationships with people who would love them and support them to the end. That seems to be the thing that matters most to a lot of people.

Doing a sort of "life review" can also be helpful for some people as they search for acceptance. If the person is willing, get them to tell you stories about their life. What do they remember as important? What are they proud of? What do they regret? What was it like when they were a child? This doesn't have to be a one-afternoon project, just a direction to focus the conversation throughout the weeks and months. It can be really rewarding both for the dying person and for the loved ones who get to hear the stories.

Wishing strength and peace to everyone who is in the midst of this struggle.
posted by vytae at 9:54 AM on May 22, 2012 [6 favorites]

My mother has dementia. She is physically fit, but has been gradually becoming more frail and less able get around. I am thankful for the long-term care policy that she has which helps cover the in-home care while I'm at work.

Mostly she is happy being in her own home, eating what she wants, when she wants and going for walks when she feels like it and sleeping whenever she feels the need. But the line between reality and her dream state is weakening. Yesterday she had a terrible day dream that frightened her badly. It took the caregiver a couple of hours to "talk her down"--she called me, but I was in meetings and by the time I called back the crisis was over.

Fortunately, our family is all on the same page about care. No effort will be made to prolong her life. She is on a dementia medicine now that seems to slow the progress (Namenda) and some medicine for her osteoporosis, but that's it. We had a long talk about her wishes before her decline became pronounced and her wishes have been formally recorded in her will, at our doctor's office and with the hospital. My brother and I have power of attorney for financial and health care. We just finished filling out a new POLST (Physician's Orders for Life-Sustaining Treatment) form and a copy will be held by the doctor and in Kaiser's computer system and I'm posting a copy on the refrigerator and putting one in her purse.

All this takes planning and communication. The conversation is hard to start, but it is vital. Even knowing with absolute certainty what her wishes are, it was hard to sign the POLST form--but it is the right thing to do.
posted by agatha_magatha at 10:27 AM on May 22, 2012

Last year my GP retired. She asked for a final appointment beforehand, and during it, she asked if there was anything she could prescribe for me. I have some serious health problems that impact my quality of life. We both understood what she was asking to see if I wanted. I didn't take her up on that particular offer, mostly as I was concerned about the shelf-life of some of the medications. I know I'll probably need some assistance to be comfortable, as it's put these days.

After helping many friends through the last days of suffering with HIV, I have a good idea of how much a body can withstand after the mind is gone and suffering is all that remains. I don't want that to happen to me, and I can't count on PCP (pneumonia, not the drug!) taking me out. I've written out all the legal paperwork and hope my caregivers respect my wishes for a final cocktail and cigar in bed, if I'm unable to to take that last helmetless motorcycle ride or glacier climb.
posted by Dreidl at 11:22 AM on May 22, 2012 [3 favorites]

Speaking of dementia, one service provider in the Netherlands set up a sort of Truman Showesque village for Alzheimer patient, where they can pretend to still live the lives they knew decades ago.
posted by MartinWisse at 2:25 PM on May 22, 2012

The tragedy is that our culture has made an enemy out of the wrong thing. The enemy is not dying. The enemy is dying painfully and fearfully.

Yeah, I disagree. The enemy is indeed dying. I'd rather die nicely than in pain and fear, but I'd rather not die.

We're far from being able to "conquer" death, but I don't think that it's necessarily impossible, depending on your definition. At the very least, extending lifespan dramatically (say an order of magnitude or two). So I see all this life-extending tech as a good thing. I mean, maybe it is impossible to have such a dramatic change in lifespan / death, but I think at the current rate of progress it's impossible to dismiss the idea. (Unlike some of the futurist types, though, I think any dramatic change is very far away and probably well outside my likely lifespan).

The negative side comes with the idea that its wrong to _choose_ to die, which I disagree with. Choosing death is entirely rational in some cases and it should be the right of everyone to do so.

Death may not be your enemy, but it absolutely is mine.
posted by wildcrdj at 2:58 PM on May 22, 2012

I haven't been around for a while because I've been doing this for the last two years. Hey newpotato, I hope things work out. To everyone else in this thread who is going through this: I feel your pain. Sorry to hear about your grandfather, Matt.

You can be one of two things: sound mind, fucked up body (like my mom) or the other, in great shape physically, but your mind is fried (my mother-in-law).

Flash back to Mother's Day 2010, my mom is fine. She's giving us gardening advice. July 2010 she sort of forgets to eat, loses a lot of weight and her cancer returns. She goes to the ER in a huge heat wave, endures eight hours of tests, nada. Stays with us for a few days. Returns home. Has another episode, goes to a better suburban hospital. More tests, goes to psych ward for 72 hours. Self admitted, depression. Does not want to stay in psych ward. Lives with us for 2 weeks.

Let me digress here. You don't want your elderly parent living with you any more than they do. Anyone who tells you different is full of shit. She got up before me - and I get up pretty fucking early - and would be sitting fully dressed on my couch with her belongings in a plastic drawstring bag.

She returns home, we go to geriatric psychiatrists, eye doctors, dermatologists, GPs, and cetera for a long time. In December 2011 they run some tests and see that her cancer is back. She's too weak for surgery or radiation at age 86 and about 86 pounds what is the point?

She enrolls in hospice care in January of this year. Vitas hospice, they are pretty good. I get immediate pushback from everyone - "why is she in hospice? Why not do everything to help her?" She's in good shape mentally but is dying. A couple days after Valentine's Day she falls and breaks her hip. The End.

Ten days in hospitals, transfer to rehab center, a month there, midnight call while I'm on business travel to DC, she's going by ambulance to the hospital. She's in renal failure. I said a little prayer for her to die and felt a little bad.

She gets transferred to in-patient hospice (what the article said about moving around) but you can't hang out there. She outlives two roommates. One family - everybody grieves differently - was a huge Irish Catholic blue-collar Northeast Philly crew and there where a dozen in the room, taking cell phone pictures and using laptops on the free WiFi. Outstanding for my pretty reserved and quiet mom. Four weeks later they kick her out. I get hospital bed, oxygen machine, new cable, flat screen, 24 hour caregivers and start the process for getting a HELOC using her house as collateral.

There she is, hanging out in her living room. She watches the Phillies, the deacon brings her holy communion, people visit her. She's not ready to go yet.

Did I mention that if you have any family drama that this will raise it to a fever pitch? I left out the parts about the travelling notary, the will, the durable powers of attorney, etc.

Good luck if you are going through this. If not, get your shit in order. Fuck long term care insurance. Put the money you'd spend on some actuary's wet dream in the bank and then throw a party. Let people know your wishes. Don't take shit from assholes in the medical establishment, refuse to be intimidated. Do your own research. Keep good records.
posted by fixedgear at 2:58 PM on May 22, 2012 [5 favorites]

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