A Pacemaker Wrecks a Family's Life

June 20, 2010 12:49 PM

What Broke My Father’s Heart: How putting in a pacemaker wrecked a family’s life.
posted by homunculus (76 comments total)

Doctors don't get sued by families or patients whose lives they help extend long past usefulness, enjoyment, or managability. Doctors get sued by families of patients who die.

If the doctor, in this case the cardiologist, does not personally know the family, they may be likely to be unwilling to assume the risk should something happen and death result.

Blame our litigious society for defensive medicine. And blame the self righteous interlopers who want government to interfere, on behalf of the religious, for not allowing those of us who want to die with dignity, to do so.
posted by Xoebe at 1:03 PM on June 20, 2010 [11 favorites]

Yeah, I read this and it made me think of when my mom was trying to decide whether to bother with (modestly life-extending, not curative) chemotherapy for her cancer (which is what ultimately killed her), when what she really wanted was some extra quality of life time before she fell into rapid decline. Complicating the decision was her added condition of PSP (think Parkinsons + Alzheimers), and how she really didn't want to add nausea and mouth sores to existing pain, creeping dementia, muscle weakness and falls.

In the end, she decided to quit the chemo and we backed her up, and she had a couple pretty good months before it all went south. But the really hard part for her was feeling like she had to convince us of the validity of her choice. It can really feel like an uphill battle, against doctors, against your medically-evangelized family.

We look to doctors to recommend the best choices, since they have expert knowledge we lack; on the other hand, they don't know us and don't know what we want, the way we know ourselves.
posted by toodleydoodley at 1:03 PM on June 20, 2010 [9 favorites]

I just read this a few hours ago. And have been making a list of criteria for my own DNR instructions. How sad that I would have consider every possible scenario just to have a more dignified death some day. Lingering is not living.
posted by jeanmari at 1:03 PM on June 20, 2010 [4 favorites]

I might be just bristling against this because my own sixty-two-year-old mother has a pacemaker, but it seems to me that what really wrecked this family was the stroke-caused dementia that the father suffered from?

My dentist was recently telling me how he has to make difficult treatment decisions with his oldest patients, particularly those who are incapacitated--that it takes a lot of conversation with caregivers to explain why their elderly parents might not need "Cadillac-quality" care. And that not all dentists would do so, sometimes for selfish financial reasons, sometimes because they try to always give the highest standard of care possible regardless of if advanced age necessitates it. I suspect that for doctors--who may additionally be used to patients and caregivers pushing for extreme life-extending treatment options--this choice is even more difficult.
posted by PhoBWanKenobi at 1:07 PM on June 20, 2010 [4 favorites]

Time to see the attorney, as my wife has been telling me for years, to draw up the DNR paperwork.

Thanks for posting this, it is a well written and compelling article.
posted by HuronBob at 1:07 PM on June 20, 2010 [1 favorite]

Four months ago my mother died, four and a half months ago I spent every day wishing she would Going to the hospital praying someone would be there to give me the "bad" news. Cancer robbed my 52-year-old mother of every piece of vitality she ever had. Sure she'd come home most days after work and watch television, but she worked sixty hour weeks since we came to America. She got plenty of vacation time and spent it gallivanting around Europe, the Caribbean, South America, you name it.

After the chemo failed, it was obvious that there was no chance her condition would only get better; stabilization was the best would could hope for. When it came time to talk about things, she made it very clear: maximum pain relief and don't we dare resuscitate her. She'd said she'd rather be dead than have her life tied inextricably to a machine. On the one hand, I knew it was for the rest of the family, so we wouldn't have to watch her slowly decay and care for her like a child. She always put others ahead of herself. On the other hand, I knew she had a very clear conception of what "life" meant, and being bedridden and full of morphine sure wasn't it.

There's life, and then there's chronic hospitalization, pain, the haze of morphine, more pain, the emotional stress on your family and on yourself. The reason I'm writing all this is because I want you to put together your DNR paperwork. As soon as you can. Ask your parents to, as well, no matter how old they are: my parents died at 33 and 52.
posted by griphus at 1:15 PM on June 20, 2010 [33 favorites]

My grandfather was active and spry two years ago, but suffered from back pain (as he had all his life, as my father has, and I have). He walked two miles every morning, did his own automotive maintenance, and made annual trips to California to visit his gold-prospecting club and pan for gold. I often remarked that he looked like he was still in good enough shape to kick my ass in a fight - and he probably was.

Then, at the age of eighty, the doctors at the local VA hospital where he goes for care decided that surgery to remove herniated disks in his back would help him.

At eighty.

Since the surgery he hasn't left his house more than a dozen times. He doesn't go for walks. He falls often. He can't ride in a car for more than an hour or so without the pain becoming unbearable.

Last year he attempted to drive his motor home to California to meet his friends. In a week, he made it partway across Nevada before turning around and going home. That's an average of about 75 miles a day.

He's trying again this year. One of my uncles is driving the motor home. My guess is he'll stay in it the entire trip.

It breaks my heart to see a once-strong man reduced to this.
posted by mr_crash_davis mark II: Jazz Odyssey at 1:18 PM on June 20, 2010 [9 favorites]

I arrived at the hospital with a signed and legal DNR order for my chart when I went in for scheduled surgery. I thought my anaesthetist was going to have a heart attack during our pre-op consult the next morning. As he pointed out, I was only 30 years old; as I pointed out, that's potentially 50-plus years of catastrophic quality of life and long-term care. I'll take dead over that any day.

Until humans have the right to die with dignity, these kinds of situations will be unnecessarily adversarial. Without that right, ass covering is more important than quality of life, and here we are.
posted by DarlingBri at 1:22 PM on June 20, 2010 [17 favorites]

PhoBWanKenobi: "I might be just bristling against this because my own sixty-two-year-old mother has a pacemaker, but it seems to me that what really wrecked this family was the stroke-caused dementia that the father suffered from? "

Of course there wasn't a singular thing that wrecked the family, beyond the hard reality that especially in later years, modern medical treatment can easily extend a finite lifespan far beyond the even more finite span of quality of life. This is intertwined with the modern medical system incentivising exactly that extension by providing no rewards at all for going over the pros and cons of treatment options that can result in the heartbreak of life outliving quality life. A bit that really resonated for me:

Medicare has made minor improvements since then, and in the House version of the health care reform bill debated last year, much better payments for such conversations were included. But after the provision was distorted as reimbursement for “death panels,” it was dropped. In my father’s case, there was only a brief informed-consent process, covering the boilerplate risks of minor surgery, handled by the general surgeon.

I believe that my father’s doctors did their best within a compartmentalized and time-pressured medical system. But in the absence of any other guiding hand, there is no doubt that economics helped shape the wider context in which doctors made decisions.
...
My mother was given more government-mandated consumer information when she bought a new Camry a year later.

And the point made later about the hard lesson that there are circumstances when it's a mistake to view doctors as healers or fiduciaries, but rather that they're highly skilled technicians, who have their own agendas shaped by the system they're in.

But the pacemaker didn't wreck the family, no; it serves as a title hook and a graspable entry point to a much more painful complicated mess that is elder and terminal healthcare.
posted by Drastic at 1:22 PM on June 20, 2010 [3 favorites]

This is the reason I don't read the NYT. I find this material infuriatingly sanctimonious and self-righteous. Somehow it is someone else's fault that they didn't have the right preparations to PREVENT medical treatment and chose to continue treatment...

I've watched my mother, grandmother, and grandfather die long after the point at which I believe they would have wanted to. Yes, these people suffer immensely and you wish very much they had not. However, it was not up to me or anyone else involved to decide when these people should die and criticizing the healthcare system for keeping them alive is absurd.

If the author is expressing these sentiments because she is still in grief and these feelings are out of frustration, I can empathize, but this, at least to me, serves as an indictment of malpractice yet the alternatives are never discussed and would most likely be monstrous.
posted by hellslinger at 1:31 PM on June 20, 2010 [7 favorites]

For every case like the author of the article's father, there are elderly people who keep up active lives far longer than they would have 50 years ago because of the technology she seems to view so poorly. Dementia wrecked her family's life; if her father hadn't had a stroke, he might still have needed hernia surgery and had a pacemaker implanted, and this article would never have been written and the author would probably take a much kinder view on pacemakers. And if the cardiologist had decided to risk it and not recommended the pacemaker in this case? How many families would sue when their father died on the table?
posted by MadamM at 1:36 PM on June 20, 2010 [5 favorites]

My dad was right at the point in his cancer/chemo/radiation battle at which we were all starting to ask the difficult questions when he died suddenly, like, 60-seconds suddenly, of an aortic dissection. It was a blessing.
posted by MrMoonPie at 1:39 PM on June 20, 2010 [3 favorites]

After watching my grandmother 'rot' as my mother put it, mostly blind, comatose and barely alive for months, she's already told me that that is not the way she wants to go but quickly, like a light. Having slept on the floor of her hospital room after she was released from the ICU after a 50:50 touch and go asthma attack about 15 years ago so that someone (this was in the third world) was there in case the oxygen tube needed shifting or to call and ensure a nurse would come or a doctor if required, I wish there was a middle path between too much medicine and too little. When did we stop pondering these things as a society and coming to consensus on what and how and where? (except for here on the blue, as mental masturbation that simply satiates our own need to express these thoughts and debate them but doesn't seem to change anything anyway)
posted by infini at 1:39 PM on June 20, 2010 [2 favorites]

Doctors don't get sued by families or patients whose lives they help extend long past usefulness, enjoyment, or managability. Doctors get sued by families of patients who die.

If the doctor, in this case the cardiologist, does not personally know the family, they may be likely to be unwilling to assume the risk should something happen and death result.

Well, right. I'd rather not have some "doctor" deciding when it's best for me to die. Why would I?
posted by delmoi at 1:40 PM on June 20, 2010

This is the reason I don't read the NYT.

This crazy generalization is the reason I didn't read the rest of your comment.
posted by found missing at 1:40 PM on June 20, 2010 [21 favorites]

Heartbreaking story.

This is my first father's day as a father and being "only" 25 an end of life plan has never been at the forefront of my mind. However, as my parents age and as I quickly transition into a life with a child it pains me to think of doing this to my own family.

Coming to terms with my own mortality is much easier to deal with when thinking about quality of life. The impact that declined cognizance will have not only on my own, but increasingly more importantly, my family's quality of life. I think I'll have to sit down with my wife and really start threshing this out.

It seems that having an extremely clear and thorough end of life document is the only way to go. Anyone suggest good reading material or links?
posted by Quack at 1:41 PM on June 20, 2010

And if the cardiologist had decided to risk it and not recommended the pacemaker in this case? How many families would sue when their father died on the table?

isn't this what informed consent waivers are for? and if it's not, shouldn't it be?
posted by toodleydoodley at 1:48 PM on June 20, 2010

I have a really bad feeling that both my parents and my in-laws are getting ready to enter this little hell. All four are still healthy, drive, and live on their own, but my father has already outlived his father, he has a pacemaker and a very tricky heartbeat that requires him to do extremely fine-tuned drug doses (cutting the pills in half, then in half again) and to eat a high-salt diet to keep his blood pressure up (no, really, he said even his doctor couldn't believe he was telling someone to do that). Mom is diabetic and has two artificial hips and an artificial knee. They live together 100 miles from here and have hardly anyone they can rely on.

My relationship with them is casual. We had a rather difficult nest-departure experience, and for 17 years I didn't talk to them at all. My wife still won't talk to them. A few years back they asked if it would be OK to make me executor of their will. They put my name on all the bank accounts. Whenever I visit the subject of what I should do with the house when I get it comes up regularly. I always tell them it's way too soon to talk about that, partly because hey you guys are gonna live forever and partly because hey, if one or both of you end up in a home it's gonna suck up that house and all those CD's like a cat licks up milk.

I don't want their house or their money. But it has started to occur to me that one day, one way or the other, I'm going to get a really horrible phone call. And I'd rather not have that, but I am not seeing any way it can be averted.

The situation isn't much better on my wife's side. Her parents live 1,000 miles away but her brother and sister live half-way across the country and in the Far East, respectively. They got divorced 20 years ago and live apart but remain friends and travel together often. My FIL is 81 and last time they visited I noticed they didn't drive down, but flew and rented a car instead. Both of them have had quad bypasses in the last 10 years. My FIL is almost blind and really shouldn't be driving anyway. As with my parents it's just a matter of time, and it's hard to say what will happen. The sister is the sort who will fly in on the first hint that something needs to be taken charge of, but we're still a lot closer.

The way we manage death in this country makes the way we manage health look almost sane by comparison.
posted by localroger at 1:54 PM on June 20, 2010 [3 favorites]

That was more interesting than expected.
posted by brokkr at 1:56 PM on June 20, 2010 [1 favorite]

We should all have the option of installing an anti pacemaker. Once installed we could set our own private password. When the time was appropriate we would give the password to a loved one and they would turn it on and us off. If only it was so simple.
posted by notreally at 2:07 PM on June 20, 2010 [4 favorites]

She's not criticizing the technology. Of course it helps many people.

She's criticizing the way the technology has been used indiscriminately and the way the medical system deemphasizes informed consent under circumstances like those of her father's illnesses.

Having also watched a parent die of cancer I can attest that some doctors (happily not all, or in my experiences, even most) are more interested in throwing every possible treatment at the illness than treating the patient and thinking of her overall quality of life (let alone those of her caregivers).
posted by miss tea at 2:09 PM on June 20, 2010 [6 favorites]

I couldn't finish reading this. My mother is 85 and has senile dementia. My wife and I are her caregivers. Every morning I wake up hoping to find her dead. I used to feel guilty about this. I don't any more. As the dementia deepens and she grows more and more detached and afraid and confused I can feel it gnawing away at me, too. Then she'll have a good day, and she'll know who I am and she'll remember my wife's name and she'll smile when her cats jump in her lap and she'll exclaim about how good the tomatoes are this season and how I never make the coffee strong enough and for a moment it's almost like she's back with us. But that's all it is: a moment. Like the way the tracks throw sparks as the train moves through a tunnel. A flash, a moment, then darkness.

Before she became sick, mom signed all the DNRs and Living Wills and made sure her doctor had them on file. I've gone over end-of-life plans with her doctor and her attorney.

But I have no doubt that when the time comes it'll go just like it did with my father, who died of congestive heart failure a decade ago: they'll rush in with the carts and the crash team and start their machinations while we get pushed to a corner saying no no no no he didn't want this let the man die with some dignity not hooked up to a machine please go away and let him die.

Gah. That was not what I wanted to be thinking of on Father's Day. I'm gonna go for a walk in the sun and drink a cold beer.

As for me: if I am ever diagnosed with dementia or Alzheimer's disease I ask that the first person with the will to do so put a bullet in my head.
posted by BitterOldPunk at 2:30 PM on June 20, 2010 [89 favorites]

My father is living on his own in a condo in Toronto. I am involved in trying to get him care but we have not spoken in more than five years. His partner of 35 years was recently taken to hospital; on top of the dimentia, his esophogus is disintigrating and we're now essentially waiting on him to get the inevitable pnumonia and die. He will not be going home in any case, and plans are being made for a long term care facility.

This leaves my long-term alcoholic father on his own. He drinks all day every day, smokes, and doesn't eat; he's been in a diabetic coma three times in four years. He has significant mental health issues and is reportedly hoarding. The next time he collapses on the floor, there will be nobody there to call an ambulence, meaning a slow lingering death of dehydration, for which he will mercifully be unconcious.

There is absolutely no quality of life there. There's no partner, no children, no leaving the house, no real understanding of what year it is or what's going on around him. There's nothing, nothing at all except the drink that's killing him remarkably slowly.

Every single day I think about flying to the US on a friend's passport, driving over the border, and smothering him in his sleep. Not because I don't want the pain in the ass of dealing with his healthcare, but because it is at this point by far the most merciful thing to do.

Everyone should be able to decide when to go. My father would have pushed the button 30 years ago.
posted by DarlingBri at 2:49 PM on June 20, 2010 [1 favorite]

I am glad beyond measure that the official line is now that pacemakers may be removed or switched off with caregiver consent, that they are like any other form of mechanical assistance or treatment. The situation that endures where machines are moving blood around and blowing air into what's essentially a corpse is ruinously evil.

For those of you with specific advance directives, please try to write them in such a way that the focus is on you and your capabilities, not on specific technologies. Life-extending treatment moves very fast, and a document that was current in 2000 won't be now, and certainly won't be in 30 years. Mine says that if I'm in a situation in which the medical consensus is that cognition is unlikely to return to what my next of kin considers an acceptable state, that I'm to be maintained on everything possible for three days -- three sunrises, three sunsets -- and then all support should be withdrawn. Three days is enough time for a miracle to occur, and more to the point, it's enough time for people to come to grips with what's happening.

I should write in specific instructions for Alzheimer's or dementia, though; at what stage do you step down from full code to DNR to DNI (do not intubate) to DNT (do not treat)? How do you write that to be bulletproof and clear on intent against a backdrop of constantly changing technology?
posted by KathrynT at 2:56 PM on June 20, 2010 [17 favorites]

My parents are both in their late 80s, but with no major health issues. I know it's just a matter of time, but I can't imagine it will be easy.
posted by tommasz at 3:22 PM on June 20, 2010

Dementia wrecked her family's life; if her father hadn't had a stroke, he might still have needed hernia surgery and had a pacemaker implanted, and this article would never have been written and the author would probably take a much kinder view on pacemakers.

But that's exactly what the author finds so frustrating -- that the technology is being used with no realistic sense of context. In the face of severe dementia, it's difficult for me to not consider it outright cruel to force that person's heart to keep going beyond even brain death. In completely different circumstances, of course a pacemaker can vastly improve someone's quality of life. That's not what was done here.
posted by desuetude at 3:35 PM on June 20, 2010 [1 favorite]

I can't read this right now. It's Father's Day and my dad has been in a vegetative state since he had a stroke a while ago. It's too painful. But I'll favorite it and maybe someday. Not today.
posted by Splunge at 3:45 PM on June 20, 2010 [1 favorite]

I'll be facing this soon with my parents and I dread it.

My maternal grandmother passed away from a stroke instantaneously when she was 89. Her quality of life was still fairly good- there was some mental decline, but she was still happy with my grandfather. He went downhill afterwards, and five years later had his final stroke (he had been having many micro strokes previously) and went at the age of 98.

My fraternal grandfather had all sorts of end of life extensions done for him. I remember seeing him for the last time in the hospital, seeing a shell of a man who had always seemed a giant in my eyes. I had never been particularly fond of him, but he left a mark on my mind. It was like looking at a tiger without its claws or teeth. My grandmother saw this and declined to have any major life extending care made for her. As far as I know, she died peacefully in her bed.

My parents, having seen what happened to my father's father, want none of this.

Despite all this, I noticed that the statistics on stopping things like pacemakers, etc. only 30% of patients would do the one day trade. A full 70% wouldn't or at least weren't sure. At this point in time (I'm only 28) I think I might find myself in that camp. As long as I can think I think that I'd like to stick around. But I am fully aware that that view may change. On preview, I agree with KathrynT.
posted by Hactar at 3:56 PM on June 20, 2010 [1 favorite]

This article was especially difficult for me to read, considering that about 3 months before my father's passing, he was given the choice to get a pacemaker, wanted to decline, but got it because my mom and I told him we thought it sounded like the best thing to do, given the circumstances and the doctor's rationale. My dad pretty much told me that getting the pacemaker was for me, because it made me feel better. I guess now I'm stuck here wondering if encouraging him to get one was the right thing to do, although the difference in my situation is that it didn't end up helping him live much longer, anyway. This article reminds me that his insistence in not-going to the doctor when he started feeling sick this past October may have been a blessing in disguise.

At the least this article seems like a good case for healthcare proxy cards (which, if I recall correctly, are something free/simple you can do to put someone in charge of your care in case of emergencies? I'm fuzzy on the details of how those things work.)
posted by NikitaNikita at 4:13 PM on June 20, 2010

That was lovely.
posted by A Terrible Llama at 4:19 PM on June 20, 2010 [1 favorite]

DarlingBri, would your father truly have pulled the plug only five years into the relationship that would last another 30?

If so, that's a horribly tragic story.

In any case, I'm sorry that you're having to go through such a hard time with an estranged father and his incapacitated partner. Best wishes to you.
posted by torticat at 4:38 PM on June 20, 2010

thank you for posting this. Tough read, makes me think of my future.

<>

Thank you.
posted by nostrada at 4:39 PM on June 20, 2010 [1 favorite]

Single-page version
posted by tapesonthefloor at 5:10 PM on June 20, 2010

I had a long comment written about my mother's end of life, my role in it, and how I felt about the whole thing, and I have to say I still get pissed when it comes to:

1. Pain Management
2. The HPV vaccine (love your daughters people!).
3. Euthanasia

I'm not going to make that post though. It would be pages long and get me too upset to hit "post."

While my mother was dead in her bedroom, and my father and I were waiting for the mortician to arrive (a family friend much like ColdChef), someone from the "State" came to do an inventory of the narcotics (and made me initial a sheet as each was poured into the toilet).

I won't comment on Jeffery, but if someone had asked me to help stop his pacemaker, I would have researched how it would react to a Degaussing Coil.
posted by cjorgensen at 5:24 PM on June 20, 2010

There is a really sweet hugs thread in MeTa right now for everybody in here who's thinking of their departed (or not quite departed) dad or mom and quietly sniffling.

Thanks nevercalm
posted by toodleydoodley at 5:30 PM on June 20, 2010

At the end of my life I want a button, a timer, and a heroin overdose. If I push the button I get another 48 hours.
posted by five fresh fish at 5:36 PM on June 20, 2010 [1 favorite]

When did we stop pondering these things as a society and coming to consensus on what and how and where?

Of course we haven't stopped pondering these things. This is what bioethics is all about, taking the upper limits of medical science and trying to create some ethical understanding of them.
posted by meese at 5:57 PM on June 20, 2010

DarlingBri, would your father truly have pulled the plug only five years into the relationship that would last another 30?

I think so. It is a tragic story; he was a very accomplished man in his day, charming and witty and one of the last great debonnaires. But I look back at the last 30 years and I see nothing - literally, nothing - of value, merit or even joy there. The relationship, while admirable for its longevity and loyalty, was a clusterfuck of co-dependency and abuse and his partner would have inarguably have been better off with out him for most of those decades. They are empty, repetitive years with nothing except the quest to commit suicide in a bottle. I don't think anyone is more surpised than he is that he's lived this long; that certainly wasn't his intention.
posted by DarlingBri at 5:59 PM on June 20, 2010

A well-written advance directive is important for everyone.

Many advance directives are poorly thought out. Here's one, full of advice, that covers the legal bases depending on which state you're in.. It's hard to fill out - you have to do some serious soul-searching, and have hard conversations with those that it will affect.

Once you've filled it out, TELL PEOPLE, and give copies to others so they can advocate on you and/or your family's behalf.
posted by lalochezia at 6:10 PM on June 20, 2010 [3 favorites]

As far as I've heard, my father (an oncologist) tends to lean more towards the "quality of life" recommendations rather than the "eke out every last day no matter how chemo-ravaged" recommendations. Some people (and their families) really appreciate this way of thinking, but there are still people who really don't. Some people want their loved ones around every extra day humanly possible, even if those few extra days of life are all but miserable for the sick person. And they get angry about suggestions to the contrary.

These decisions can be complicated for doctors, too, and not just for reasons of worry about malpractice accusations.
posted by that girl at 6:26 PM on June 20, 2010 [4 favorites]

My mother went through this kind of thing in the 70s with her mother, who had a stroke after a long period of decline that had already landed her in a nursing home when my mother could no longer cope with her care. The doctors told my mother that if they inserted a feeding tube, my grandmother would last a week. Instead she lasted two years without regaining consciousness, and died on my mother's birthday.

My father had a heart attack about ten years later. They resuscitated him briefly but he had a second massive attack and was dead within an hour. If I believed in a God, I would thank it every day that my mother didn't have to endure with him what she did with my grandmother.

I have my mother's medical proxy and very clear instructions, and I hope that when and if it comes down to it that I have the strength and wisdom to let her go.
posted by immlass at 6:26 PM on June 20, 2010 [2 favorites]

When my mother went in for emergency intestinal surgery, which turned out to be her final surgery, she died in recovery. Despite the DNR, despite the medical power of attorney held by me and waved around wildly, despite her often stated, firmly held wishes and my wishes and my brother's wishes, they put her on a respirator and brought her back to life. The doctors said that if somebody goes into a crisis in recovery from surgery, then, through some loophole, DNRs don't count. Respirators are necessary, they said. She did come back to life.

She came back for 2 weeks of pain and struggle and unhappiness, trapped in the hospital, the place she hated more than anywhere else in the world. Eventually, it was that respirator that killed her, due to complications from twenty year old throat surgery and then pneumonia and, of course, because you're not going to be hospitalized without it these days, MRSA. It seemed never ending. Finally, finally the medical establishment gave up and that evening, mysteriously, all the doctors disappeared from the ICU and the nurse told us it was time, gave her ativan to ease her passage, took away the oxygen and left me and my brother there to hold her hand as she slipped away.

My father, who refused to go to the hospital and died of liver cancer in his own room, had the right idea even though that too was hard and painful and long. He died of thirst, you see. That's what happens when you're in a coma and have managed to refuse the feeding tube and even, then, the ice chips and bits of water. You can't let him have an overdose of fucking morphine, that would be wrong and the hospice people count the pills. So much better to let him go slowly, rasping breaths from a dry throat that get further and further apart for three days, a long three days a decade ago.

Now my brother and I take care of our 81 year old aunt with (fortunately still relatively mild) stroke induced dementia and I worry all the time that she will get sick, but not quite sick enough to die. I worry that she'll have another stroke, or something that will leave her incapacitated and hospitalized and, because she's physically in great health, her body will go on without even the remnants of her once amazing mind. I hold medical power of attorney and we have a DNR, although she doesn't understand it, but I've already seen them ignored. Dementia is the cruelest thing in the world and, like BitterOldPunk, I want someone to kill me if it comes my way. I've already told my children that if it happens, I want them to help me overdose. After what we've seen and after the black jokes of the last few years - keep smoking! Die young! - they agreed without argument.
posted by mygothlaundry at 6:27 PM on June 20, 2010 [9 favorites]

The only reason I'm not bawling (and I'm pretty damn close) is that I'm at work, and I really don't want to explain why to my coworkers.

Yesterday was my first Father's Day without my Dad. His guts essentially fell apart last summer, one too many bouts of diverticulitis, adhesions from old surgeries. After the first surgery to clear out the blockage, the sutures wouldn't take. They tried again, but nothing would hold, and finally, they told us that if they were to try again, at best they could have kept him alive, in ICU, for maybe another six months, heavily sedated. As it was, he had no idea what was going on, or where he was. It ended up being my decision to stop care, but we all agreed it's what he would have wanted before he entered the hospital.

The thing is, he couldn't speak. He couldn't tell us that we were doing what he wanted. And logically, we can all say we wouldn't want to be kept alive, I can't know that for certain. He struggled to breathe after the machines were turned off. I was holding his hand, and he was looking at me the whole time, and while I guess we made the right decision, I still don't know if it's what he wanted at the time, and I don't think I ever will.

I miss my dad.
posted by Ghidorah at 6:37 PM on June 20, 2010 [12 favorites]

We've discussed this before, and my comment there still sums it up for me. For my parents, I hope the paperwork they've filed (post Schiavo) are more useful than those drawn up by the father in this story.
posted by availablelight at 6:38 PM on June 20, 2010

Hugs and love to all of you sharing stories here, particularly those who are dealing with tough times now. Hang in there.
posted by salvia at 6:39 PM on June 20, 2010

Some people (and their families) really appreciate this way of thinking, but there are still people who really don't. Some people want their loved ones around every extra day humanly possible, even if those few extra days of life are all but miserable for the sick person. And they get angry about suggestions to the contrary.

Heck, my mom is on record as saying that she wants to live for as long as humanly and medically possible, and that she doesn't care how much it costs (and who has to pay the bill), how painful it might be to everyone involved, and how hopeless it may be. Given that she saw her own mother die pretty horribly of Alzheimer's, I have no idea how she's come to this conclusion, but I fear that my sister and I are in for our own version of hell down the road.
posted by scody at 7:19 PM on June 20, 2010

I just can't read this. Today, as for the last 11 days, I have sat in a hospice facility, holding hands with my mother-in-law. She is dying, slowly, gasp by gasp. In less than two weeks, my husband and I have gone from long, serious conversations with her to being pleased that she recognizes us and can say our names.

After her diagnosis, but while she was still in her home, she filled out her DNR, living will, power of attorney and all the relevant documents. She told us about her wishes. Then she made the single most important call: to the local hospice.

Hospice made it possible for her to *not* go to the hospital, which she hated and feared. They helped pack pill organizers, offered to run errands, sent a nurse to visit every few days, arranged delivery of medications and gave solid advice on end-of-life issues. When she couldn't leave her bed much, and the pain got worse, hospice was there with stronger meds and told me to call when I needed help. 24/7. And when I did call, I got clear, helpful, informed instructions. They were never annoyed by phone calls.

Finally, almost two weeks ago, I called because even with the strongest meds, I couldn't help my MIL manage her pain. Hospice said to bring her in. I did. The care provided has been amazing, even if tinkering with the right meds mix has taken time. Doctors, nurses and volunteers alike have been outstandingly humane and skilled, and even though they cannot prolong my MIL's life, they are giving her a level of comfort and care that I could not match at home.

She is dying. But she is dying in good hands. No tubes. No machines. Only medicine for the pain and human comfort for the soul.

To all who have lost, or are losing, parents: I wish you strength.
posted by MonkeyToes at 7:36 PM on June 20, 2010 [17 favorites]

Hospices are, in a word, fucking awesome. I recommend anyone inheriting these days donate a part to their local hospice: it very much in your own best interest to help get them established in our society.
posted by five fresh fish at 7:59 PM on June 20, 2010 [4 favorites]

Hospices are fucking awesome. I also liked the book Lessons for the Living, a glimpse into the life of a hospice volunteer. (The author is not always entirely a sympathetic character, but you see that he realizes his own flaws.)
posted by salvia at 8:33 PM on June 20, 2010 [2 favorites]

Hospices are fucking awesome. You call and say your mom's almost out of liquid paincrusher and a dude on a motorcycle shows up 30 minutes later with another bottle. and then your mom goes back to sleep, restfully, again. for now.

can't say enough for Hospice. In fact, they're getting a check from me in the name of the next fool to have a birthday.

and speaking of checks: In Nick Kristof's other Father's Day column (the one not about his own late father), he offers alternatives to ties and gas grills and whatnot, suggesting ideas from globalgiving.com (sponsor a pouched rat that sniffs land mines?) or riders.org (sponsor a motorcycle clinic in Zambia).
posted by toodleydoodley at 8:46 PM on June 20, 2010 [1 favorite]

Thanks, MetaFilter, for reminding me that hospices are fucking awesome organisations. You prodded me to go make a commitment to my local hospice's annual fund-raising event; I'll be raising money in September.
posted by DarlingBri at 8:54 PM on June 20, 2010 [2 favorites]

Damn, I'm crying now.
posted by mike3k at 9:21 PM on June 20, 2010 [1 favorite]

Yeah, I didn't really care for the tone of the article. It had that "bucking for a Pulitzer" feel to it. But I suppose the story wouldn't have been printed (bought?) had it not contained a little muckraking against the military-industrial-pacemaker complex.

Death sucks. It's the price we pay for life.
posted by gjc at 9:23 PM on June 20, 2010 [1 favorite]

I was lucky enough to celebrate Father's Day with both of my parents, and had a great discussion about this very issue in the car with them earlier. My dad's a primary care physician and also does medical direction for a small nursing home, so he's no stranger to palliative care, comfort measures, and hospice. When his father was dying of cancer, my dad tried to lay grandpa's options out before him: comfort measures and hospice or a last-ditch and likely unwinnable battle.

Dad thought that my grandfather, who at that point was "staring into the face of the dragon," would easily accept hospice care rather than put himself through hell for a couple extra months. Grandpa surprised everyone when he decided on the hard fight and told dad that as long as he had the option, he might as well try. The fight did not go well. He spent a few months fighting the good fight, but wound up transferring to a hospital for his last few days. Of the decision Dad said, "Shit, who do I know better than my own father? If I can't predict what he was going to do, how can I claim to know what's best for anyone else? I used to think that I knew what was best, but now I think everyone has to make these decisions for themselves."
posted by The White Hat at 9:31 PM on June 20, 2010 [1 favorite]

Please note that "invalid" and ignored health care directives do not only happen to old or very sick people. In California and several other US states, pregnant women are not allowed to make or sign living wills or have them enforced during the term of their pregnancies. I asked an AskMeFi question about this a few years ago and this does indeed seem to be the law, asinine as it is.
posted by Asparagirl at 9:58 PM on June 20, 2010 [2 favorites]

I'm a hospice nurse. I see these things play out daily. No matter how young/healthy you are, get a living will and tell everyone about it. MD's are the worst at respecting right to die wishes, so often my patient's have to sign out of the hospital AMA because their Dr. wants to give them a g-tube, more chemo, more more more and they don't want more. It's my personal belief that no one should have to die in pain and I make damn sure my patients are as medicated and comfortable as they need/want to be, as medicated as I hope I am when the time comes.
posted by yodelingisfun at 10:39 PM on June 20, 2010 [12 favorites]

Damn this thread harshed up Father's Day.
posted by Civil_Disobedient at 12:37 AM on June 21, 2010

A number of the points the writer makes are correct, such as the Medicare system encouraging procedures (such as pacemakers, colonoscopies, and operations) by paying highly for them, while discouraging cognitive skills by paying poorly for them.

But she seems to be focusing all her frustration and anger on the pacemaker, which she believes was a terrible decision, which unnecessarily prolonged her dying father's miserable life. She is probably wrong about this. Pacemakers, in combination with drug therapy, prevent what is called 'tachy-brady' syndrome, sometimes called Sick Sinus Syndrome (SSS), in which the heart may have episodes of abnormally slow heart rate (bradycardia) intermittently with episodes of abnormal tachyarrythmias, or fast rates of heart beat.

Let's be clear: patients rarely die of SSS. They have episodes of feeling faint and weak, during which they may fall, or even pass out. But turning off the pacer does not amount to letting the patient die. Instead, it would be condemning the patient to a state of frequent episodes of lightheadedness, loss of balance, falling, and passing out. During the episodes the frail elderly patient is likely to fall and break a shoulder, a hip, multiple ribs, or the skull with perhaps an underlying brain injury.

Turing off the pacemaker is not, as the author seems to believe, a way to an easy death. It is more likely to lead to repeated injuries, each with their own painful and difficult complications, which are not easily solved in the elderly, demented patient who is already in decline.

What the writer is really railing about is the sad inevitably of human aging and frailness, and the loss of of a loved one, not all at once, but in bits and pieces, a death by a thousand cuts. She focuses her anger on the pacemaker, but her focus is mistaken.

Incidentally the difference between an 'Advance Directive' and a 'DNR' is immense. I'd rather not go into it here, it deserves a post of its own
posted by Slithy_Tove at 2:33 AM on June 21, 2010 [9 favorites]

I'm so happy to see the hospice love. Hospice care allowed my mom to die at home surrounded by family instead of in the hospital.

Hospices are truly fucking awesome.
posted by Salieri at 2:43 AM on June 21, 2010 [2 favorites]

Yeah, hospices are fucking awesome. My mom died in hospice last fall. They took wonderful care of her, and the social workers really helped me cope as well. I was able to sleep at night (sort of) while she was there, knowing she wouldn't be in pain or be at risk of falling down and injuring herself at home (she lived alone and did so until about 2 weeks before she died).
posted by miss tea at 4:32 AM on June 21, 2010 [1 favorite]

It is interesting but not at all surprising to me that in both the linked article and in so many of the comments a trip to the OR figures significantly. This line in the article: " the cardiologist, John Rogan, refused to clear my dad for surgery unless he received a pacemaker" reflects an attitude that I have spent 20 years trying to eradicate (without much success). Cardiologists should not be "clearing" patients for surgery; they can give expert advice on the condition of the patient's heart and possible risks to the patient from anesthesia and surgery but it is ultimately up to the patient, surgeon, and anesthesiologist to decide if those risks are worth it, with the patient having the final say. Even then the best course of action is difficult to decide. When pioneering surgeon Michael Debakey developed an aortic aneurysm at age 97, he initially refused surgery and signed a DNR order on himself; as his condition worsened he lost consciousness and his family asked that the surgery be done. This set off a big conflict among the doctors caring for him but the end result was that the surgery was done; he made it through with some difficulty and in the end said the surgery was the right decision. The story in more detail can be found here and here with some interesting responses here.

DNR orders are particularly troublesome in the OR. Much of what is done routinely during anesthesia would be considered resuscitation in other contexts; indeed, CPR was invented by an anesthesiologist. Because things like endotracheal intubation and administering cardiac drugs are pretty routine in anesthesia, the ASA has developed guidelines for taking care of patients with DNR orders and similar limitations of care while in the OR; see here and here. The bottom line is that it is imperative that physicians take the time to discuss these things with their patients and their families. The burden should be on the physician to initiate that conversation, since in many instances the patients and families do not realize the implications of an intervention. Unfortunately, it is all too often the case that no matter what decision is made regarding a patient's care, someone will disagree with it, as the DeBakey case shows.
posted by TedW at 7:05 AM on June 21, 2010 [7 favorites]

What the writer is really railing about is the sad inevitably of human aging and frailness, and the loss of of a loved one, not all at once, but in bits and pieces, a death by a thousand cuts. She focuses her anger on the pacemaker, but her focus is mistaken.

I understand writing can be therapeutic for people, but all the same, I tried to read this and every few minutes I kept being struck by a horrible thought that she was trying to use this pain to get a book deal, and that felt really horrible.
posted by anniecat at 7:12 AM on June 21, 2010

As for me: if I am ever diagnosed with dementia or Alzheimer's disease I ask that the first person with the will to do so put a bullet in my head.

Agreed, but due to the way our laws are set up, you can't -- or at least I can't -- ask someone in good conscience to do that. It'd be getting me my out at the cost of possibly getting them 20-to-life. The people I know who might be willing to do that out of love for me are exactly the people I would never be able to ask.

The same goes for doctors. Very occasionally you hear stories about someone with a very good family doctor who helps them out at the end if their mind has already gone but their body missed the memo. But for obvious reasons most doctors aren't willing to do that, because it's illegal, and even if you did have a relationship with a doctor that was such that you could be confident they'd do that -- could you really ask them to risk their license or jail time to do it? I don't think I could.

If you want the quick end, you have to do it yourself... but of course, that just brings you to the real rub: Will I know I'm slipping early enough to still be able to do anything about it? That's the part that keeps me up at night sometimes, after watching one person after another in my family go the slow-zombie route. How will I know when it's time to go, that I'm reaching the point of no return, when I won't be able to do the job if I wait any longer? Will I have the balls to do it when I have the capability left, or will I "just one more day" myself until the brainrot has me shitting myself in a hospital bed? I don't know.
posted by Kadin2048 at 8:18 AM on June 21, 2010 [2 favorites]

I think so. It is a tragic story; he was a very accomplished man in his day, charming and witty and one of the last great debonnaires. But I look back at the last 30 years and I see nothing - literally, nothing - of value, merit or even joy there.

Well, it's a little different than being in a vegetative state. You really can't say what will happen with someone's life, and I say this as someone who was almost killed by drinking, and I saw my step-mother kill herself that way (as well as other family members who had problems with it). It's very ugly, soul-destroying. Still, I have been at points where I felt like that about myself, and today I don't drink and am much healthier. Although not everyone will end up coming through it alive, the odds are much greater than those of a comatose person kept alive through machinery- and you do have to allow people free will if they have the capacity, or at least you have to let them go, even if they choose to destroy themselves.
posted by krinklyfig at 8:50 AM on June 21, 2010

Agree that the pacemaker is a red herring.

Still a good, although jarring, story that should make us think about what we do to old folks instead of for them.

One thing to keep in mind when making end-of-life decisions is that you have to ask yourself, "What would the patient have wanted? "
posted by etherist at 10:17 AM on June 21, 2010

Yeah, I didn't really care for the tone of the article. It had that "bucking for a Pulitzer" feel to it. But I suppose the story wouldn't have been printed (bought?) had it not contained a little muckraking against the military-industrial-pacemaker complex.

I understand writing can be therapeutic for people, but all the same, I tried to read this and every few minutes I kept being struck by a horrible thought that she was trying to use this pain to get a book deal, and that felt really horrible.

I don't understand why this tone is surprising or distracting to people. She's a professional writer with a fairly distinguished career. Who teaches memoir writing. It's kinda part of her job to sound like that.
posted by desuetude at 10:21 AM on June 21, 2010 [3 favorites]

I don't understand why this tone is surprising or distracting to people. She's a professional writer with a fairly distinguished career. Who teaches memoir writing. It's kinda part of her job to sound like that.

I suppose we've seen a lot of it in the Times, which is why I'm reacting against it. Coupled with the whole blaming doctors and the pacemaker, and then writing about her parents the way she did in a national newspaper....I don't know, my impression was that this was embracing the new kind of sellout, which is confessional-type writing. And I suspect she knows this isn't about the pacemaker, and I agree that it wouldn't have been published if, as gjc said, "contained a little muckraking against the military-industrial-pacemaker complex."

It's like a longer Modern Love column.
posted by anniecat at 12:29 PM on June 21, 2010 [1 favorite]

Like me, she no longer saw doctors — perhaps with the exception of Fales — as healers or her fiduciaries. They were now skilled technicians with their own agendas. But I couldn’t help feeling that something precious — our old faith in a doctor’s calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of broken parts — had been lost.

I'm not sure if I feel lucky or sad that I never felt that way about physicians. Sad, perhaps, since it's probably an outgrowth of how I feel about everyone: nobody else is as uniquely qualified as I am to judge the worth and chart the path of my life. Of course everyone has their own agenda, and of course we should expect our doctor's agenda to line up with our own the majority of time. But trusting others to have your own interest in mind as strongly as you do?

Other that that my major reaction to this article is that it ignores even the chance (and what I would call a probability) that our existing pay-per-procedure system and the claptrap about "death panels" is reflective of an overall attitude in American culture. There's certainly reason to dislike the system that favors a physician chasing procedures over outcomes, but all that death panel crap caught traction because not everyone is thinking about dying with dignity or quality of life. There's a LOT of people with attitudes like scody's mom's.

In fairness, that's their right too. I know how I want my life to go and to end and I have no more right to force that on them than they have to force their outlook on me. The tragedy is that we don't discuss it and we don't allow people to make their own decisions if they run up against a judgmental cardiologist or certain judeo-christian attitudes about suicide. The problem isn't that our medical system rewards a certain approach, it's that we are so loathe to discuss all the approaches that doctors can push a certain approach on people who haven't considered that there are different approaches.
posted by phearlez at 12:52 PM on June 21, 2010 [1 favorite]

After her first stroke, it took my gramma another 7 years to die. 7 years with a complete loss of mental faculties and bodily functions. 7 years of confusion and night terrors. Each time she stroked out, her DNR requests were never honored, no matter how many times my mom and her brother insisted. I was out of the country when she finally passed, and have never inquired as to exactly how it happened.

My mom told me last month that she's glad that her cancer will kill her long before she can end up like her mother. This is what it's come to. We're left feeling goddamn fucking thankful that something else horrible will at least kill you relatively quickly.
posted by elizardbits at 1:10 PM on June 21, 2010 [4 favorites]

one of the most powerful things I heard was when I called my father after his mother died and he said, no, there is nothing to be sad about, she has simply changed "clothes" referring to the hindu belief that the soul/atma is immortal and shedding a body is like shedding clothes when we trans form into 'oneness'. i learnt to listen more to what my father has to say after that.
posted by infini at 1:19 PM on June 21, 2010 [1 favorite]

And I suspect she knows this isn't about the pacemaker, and I agree that it wouldn't have been published if, as gjc said, "contained a little muckraking against the military-industrial-pacemaker complex."

But she does blame the doctors and pacemaker. She's not a doctor, she's not really offering a clinical assessment of the pacemaker, she's describing her experience with end-of-life decisions by/for her parents. To her and her mother, the pacemaker was where a corner was turned in sensemaking.

I don't adore her style, but it's sure not the most glurgy thing I've read in the NYTimes, and a lot of it rang true. (My actual experience with my grandmother's death from ovarian cancer isn't particularly similar in the details, but it did involve questionable and ultimately cruel medical and medical insurer decisions. It's the reason why my parents have quite sternly-worded DNRs.)
posted by desuetude at 2:28 PM on June 21, 2010

Reframing health to embrace the design of our own wellbeing
posted by infini at 2:51 PM on June 21, 2010

I tell my mother that when she's old and infirm I'm going to put her on an ice floe, like the eskimos did. She laughs and says "Naw, just put a hoe in my mouth and drag me out to the back 40." The ability to have a conversation like this with my mother is the reason I'll probably do anything to keep her around no matter what.
posted by staggering termagant at 7:10 PM on June 21, 2010 [1 favorite]

Kadin2048, it gets worse: if you kill yourself, will your life insurance pay out? Many policies have "outs" if the covered dies of suicide.
posted by dwbrant at 11:49 AM on June 23, 2010

dwbrant: "if you kill yourself, will your life insurance pay out? Many policies have "outs" if the covered dies of suicide."

A good point. Most policies have a two-year suicide exclusion, in which they refund the premiums only rather than paying the full policy amount. (So if you have a $1M policy for $50/mo and off yourself just before the exclusion goes out of effect, the most your family will collect is $1200, not $1M.) So, um, plan ahead, I guess is the lesson there.

There might be some crappy policies that completely exclude suicide but it was one of those things I looked at when I was shopping for policies (buying life insurance is already a bit macabre; might as well get the full experience and read all the fine print) and I didn't see any. Two years, refund of premiums paid only, seemed to be the standard. Although I gather there are some shady LI companies out there and I pretty much looked only at the majors.

I was personally very surprised at the process to get a LI policy (compared to auto or renters or homeowners); the company actually sent a nurse out to my house to draw blood and collect samples — very Gattaca — before they would underwrite me. And I don't have any red flags on my history at all. It is definitely something you want to buy (I got a fairly long term policy with the option to convert to whole-life) long before you need it, or have any whiff of unhealthiness about you.
posted by Kadin2048 at 3:54 PM on June 23, 2010

I just sent a link to this article to my parents and my brother, and the fifth draft of the accompanying email just said "I think I would like to know what you think of this article and the warnings in it." I tried so hard to write more than that, to ask my parents to tell us exactly what they want us to do in this exact situation, but I couldn't hit send on any of those versions.

My parents are in their 60s and active and completely independent and very happy in their retirement. I'm 37 and I enjoy the pretty denial bubble full of fairy dust where I can believe this will be the situation for another couple of decades.

I've been educated by their experience with my last grandparent six years ago; I will never forget my mother's email from the interminable days sitting at my grandmother's deathbed ("I cannot stand to sit there and watch her sleep but there is nothing else to do").

I know they don't want me to keep them around selfishly, for myself and my brother and my niece, and I'm the named decisionmaker in their directives, but I don't know if I'll be able to be the one to say no, let her go, let him go.

But I'm terrified that it won't be up to me, and that seems worse: my father often says that if he is diagnosed with Alzheimer's he will buy a motorcycle and drive it into a brick wall.

All things being equal, I would much, much, much rather nod sadly at a palliative care physician and say it's time than hear that my father has purchased a motorcycle.
posted by kostia at 11:24 PM on June 26, 2010