What Broke My Father's Heart (2010)

http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?partner=rss&emc=rss&pagewanted=all&_r=1&

by kumarski • 13 years ago

185 39 13 years ago

nytimes.com

kiba• 13 years ago

This article was published in 2010.

evilrevolution• 13 years ago

Your comment was posted in 2013

BaconJuice• 13 years ago

Why does it matter? That was a very interesting read. Did you read it?

unreal374• 13 years ago

A reminder that, although medical advances can extend life and some are predicting that the average lifespan will soon be into the 100's, it's fair to ask "why?" If we are in a vegetative state, have dementia, Alzheimer's, and other diseases of old age... it might be better off to let someone peacefully die.

thetylerhayes• 13 years ago

Because we're going to cure those things at the same time.

We're already seeing many advancements in earlier detection as well as reduction in symptoms for the issues you mention, if not improved prevention.

unreal374• 13 years ago

I can see both sides.

But watching someone spend 10 years with almost no quality of life while science slowly makes advances in those areas does not really help that particular family.

jtheory2• 13 years ago

Early detection and prevention are both useless for someone who is already suffering from significantly degraded brain function -- they'd have to hang around long enough that the damage could be repaired.

With the brain in particular... some kinds of damage cannot be fixed, no matter what advances we have in medicine, until there's a backup of the data available.

rwallace• 13 years ago

At the moment, a large and increasing percentage of total medical expenditure goes on prolonging the time over which people are tortured to death. We need to switch resources away from such negative value expenditure towards research programs like SENS that are aimed at slowing or partly reversing the effects of aging, which would prolong healthspan, not just nominal lifespan.

Or put another way, we need to consider the classic story about the man who wished for eternal life but should also have remembered to wish for eternal youth.

saalweachter• 13 years ago

I think to some extent the problem is that it's very easy -- to a first approximation -- to keep the body running. Keep the blood flowing, keep it oxygenated, keep it clean. It may be expensive, but it's easy to work out.

Quality of life is all in the nerves. Avoiding dementia, Alzheimer's, paralysis, blindness, deafness, ... It's much harder.

unreal374• 13 years ago

Its a tough moral problem.

Does the government and private insurance stop paying for heart transplants and life-prolonging procedures after the age of 75?

I wonder what percentage of medicare/insurance payments goes towards prolonging life into the 80s and 90s?

I can't imagine being a doctor and having to make that decision, or break the news to a family that they're not allowed to save a life due to old age of the patient...

gehar6• 13 years ago

"QALY": Quality-Adjusted Life Year

http://en.wikipedia.org/wiki/Quality-adjusted_life_year

"Under certain methods, such as the EQ-5D, QALY can be negative number."

redact207• 13 years ago

It always angers me that government and committees claim the final say to my own life. I only hope that when I do get to such an age, I have the clarity of mind to still be able to poison myself if it's a choice between a quick death or putting my family through a slow decomposition.

wjnc• 13 years ago

That's not how I read the article. I read the article as stating that, even though you have final control, there are so many players and agenda's and sudden decisive moments, that you still only have a weak grasp on events.

In my opinion, awareness is key. Talk to your spouse and/or parents, primary physician and write stuff down. Make sure (like the mother in the story) that you Know you have a choice and that you and your supporters are able to voice that choice.

jtheory2• 13 years ago

This was my take, too -- there are lots of players, many of them have strong incentives that are misaligned with many patients' priorities, and for a patient and their caregivers to even understand what decisions will help them have the end-of-life care they want is quite difficult.

Even when the patient has really good advocates who have the expertise required (like their primary care physician in the article), the system is so fragmented that very few of the professionals involved in these decisions talk with each other... so the advocate may not be able to help at all at the critical moment.

These are hard problems to solve; I'm proud to be working on part of the solution (the fragmented patient record and broken communication), but there's a lot more needed before this kind of experience will be a thing of the past.

unreal374• 13 years ago

From the article, in order to get one type of operation, her husband needed a pacemaker. The family consented to both, but the patient would not have if he had a say in it.

gehar6• 13 years ago

And what if don't, which is the common case?

Have you written your living will yet?

yason2• 13 years ago

It is perfectly within the fundamental rights of an individual to not want to be cured (or "cured"). I think doctors do recognize it, they are human individuals themselves, but because of the status quo of death being sort of a tabu they just can't officially suggest that when it's the time to go it might be the time to go.

masklinn• 13 years ago

> I think doctors do recognize it

Doctors recognize it so much they're at the forefront of avoiding this kind of behaviors and futile refusal to just die: http://www.saturdayeveningpost.com/2013/03/06/in-the-magazin...

yason2• 13 years ago

It's also a known and studied fact that doctors "prescribe" a whole lot different medication (such as natural products known for suitable vitamins, acids, and other substances) to themselves than to their clients (commercial drugs).

ixacto• 13 years ago

Alzheimer’s will be made treatable, provided there is sufficient money to be made. The oldest baby boomers are now 67 which is old enough for dementia to be a real issue. I predict that legislation similar to Nixon's war on cancer will be on the table within 5 to 10 years.

digitalengineer4• 13 years ago

Do you think your (grand)father/mother is in pain? This is what some experienced nurses ask you in Holland when you're sitting by your loved ones on their deathbead. If you say "yes, I do", they will increase the morphine. They might ask again later. (Only when it's obvious they are dying and are already in coma).

bcoates• 13 years ago

Sorry, I accidentally downvoted this comment instead of upvoting it.

digitalengineer4• 13 years ago

Totally understand. The arrows are really tiny.

LekkoscPiwa2• 13 years ago

According to some papers branch of medicine dealing with pain-killers is on a much lower level in the Netherlands than in the US. The reason is pretty obvious. Who will pay for pain-killers in socialized medicine when you can ask if they are in pain, if they want to die, and here we go! The state just saved thousands!

digitalengineer4• 13 years ago

A major artery ripped open in her head as she was preparing to go to bed. The blood, now unleaseh, flowed through the brain reaking havoc. She wasn't very old, but she knew this migh happen to her, as it did to her brother and sister. This was why she emailed her daughter every morning, to tell her she was okay. Until that last morning. When we awoke we rushed to her home. A neighbour had already warned the ambulance. He heared her slowly bang on the door in the early hours as he was walking his dog. The police broke had down the door. She couldn't move het legs, or talk. By the time she was rushed to the ER and they had made a scan of the brain she was already slipping in to coma. There was nothing anyone could do anymore. We had to wait until the blood reached the part of the brain that is responsible for your breathing. We waited by her side as she was slowly, very slowly dying. The nurses said "it wouldn't be long now" Her breaths were becoing slower and shallow. After a full day of waiting we watched her face become blue, grey and blue agian. I once read the ability to hear is the last thing to go, so we told her in kind, gentle words it was okay, she could let go, she needn't worry about anything anymore. She could let go... Finally after eight hours of painfully taking short breaths her body gave in. She had passed away... Would a dosis of morphine been a bad thing? I don't know but I would have fucking wanted it if it was me on that bed.

gehar6• 13 years ago

You could make the same non-sensical argument against insurance companies in the US, or a symmetrical argument about providers torturing patients to run up the bills for more procedures.

Or you could stop trolling.

ams6110• 13 years ago

The story mentions cognitive decline after major surgery, which is definitely a concern and not sure how much it's really discussed. My mother had a noticeable change in "brightness" after a knee replacement, and within 18 months was diagnosed with ALS. I'm not sure we can blame the surgery but I think the neurological side-effects of deep anesthesia particularly in older patients is something that requires a serious weight of risks/benefits. This was not something that was discussed by any of her doctors, at the time.

meric2• 13 years ago

I think that's why doctors recommended my grand mother to only have a knee replacement with local anaesthetic. It was interesting hearing her talk about her experience of the operation...

bsg75• 13 years ago

It would be useful to hear about her experiences, especially regarding the "drawbacks". The side effects of general anesthetic in the elderly seem to be troublesome.

Udo2• 13 years ago

When my mother died last year, it was after six months of pure torture. She had always been healthy before, then she developed sudden pain which quickly led to the diagnosis of end-stage cancer. Though my mother had previously been opposed to advanced medical treatment (she would probably still be alive and well now if she had gone to regular checkups), she agreed to chemo and radiation therapy. During the next months, her body gradually but radically declined. Before severe morphine psychosis set in, she re-iterated her instructions that no life-extending measures were to be taken. Her plan was to die at home, surrounded by her things, and the people who loved her, if possible in her green garden.

I quit everything to care for her during those last months. Our routine was to have short hospital stints to apply quick fixes for whatever was wrong, and then be sent back home where a nurse and I were taking care of her. One day she could not move anymore at all, and by sheer coincidence she was lucid at the time despite her heavy morphine dosage. We decided to arrange for another diagnostic stint at the hospital. There, she deteriorated very quickly, within hours. Sadly, she was completely delusional on that last evening so we could not say good bye to her. I had not even managed to get her some basic things like her digital picture frame or her favorite stuffed animal, because we had all thought she would be able to go home again. She was not. During that night she slipped into a deep coma, which was quite a merciful coincidence all things considered.

Because she had made sure that she wouldn't receive any life extending treatment, the hospital staff interpreted this to mean that no treatment at all would be given. I was at her bedside when she almost suffocated on her own vomit. If I hadn't been there to turn her around and make sure the fluid was drained as best as I could without any equipment or other assistance, she would have died quite horribly right there under the eyes of nurses and doctors. Next the day, her swallowing reflex had seized to function. It was very painful to watch, yet staff did nothing to drain the fluid despite my repeated pleas to ease her suffering. Finally, she died (relatively peacefully) that evening.

I can't help but feel after this, and despite having completed medical school and despite having some experience with terminal illness, that everybody failed in this. My mother should not have agreed to this huge amount of palliative care that put her through hell, for longer than was necessary and forced her to cope with the horrible staff at our local palliative center. I shouldn't have agreed to and then arranged for that last hospital visit. The hospital staff should not have denied her basic comforts and care on the grounds of a DNR. The entire thing was a huge screw-up.

Somewhere between trying everything we can and knowing when to let go, between planning and sudden decision-making, between being professional and being compassionate, there is a balance that we have not found yet.

gehar6• 13 years ago

I'm sorry for your loss.

Medical technology is not yet at a state (and probably never will be) where we have foresight and skill to balance pain relief and life protection in the face of all the ways a body can succumb. Every choice is a gamble. There is still much to improve.

At the end of life, a body is wastage, and gives no one pleasure or comfort. Don't let that overshadow everything before.

May the memory of your mother's many years be a blessing for always, as your love for her comforted her for as long as she was conscious.

Udo2• 13 years ago

Thanks, I appreciate the sentiment.

However, as someone with medical training, this experience prompted me to introspect more than anything I ever saw before. This is not just about my own private failures in the face of disaster, it has also re-kindled my conviction that a lot of things are deeply wrong with medicine as it is practiced today. Many of these things are fixable in the short term, but won't be because of clinical culture. What's worse, many other things are only fixable long-term if we as a civilization can manage commit to a certain kind of research even if it's not justifiable by (short term) profits. I've become very pessimistic about this.

tokenadult• 13 years ago

Previous Hacker News submission with lots of discussion:

https://news.ycombinator.com/item?id=1448364

The article "How Doctors Die" from a different publication has also prompted a lot of discussion about related issues in previous submissions to HN:

https://news.ycombinator.com/item?id=3313570

https://news.ycombinator.com/item?id=5104430

AFTER EDIT: I see a lot of other HN participants here are sharing personal stories of caring for dying parents, so I will briefly mention mine. Just more than eleven years ago, an April with a late arrival of spring like this year meant that we had a winter storm in early April. My dad was out on a shopping errand in the morning, and slipped and fell on an icy store parking lot while walking back to his car. He was just days before his seventy-second birthday then, and the slip and fall left him paralyzed from the neck down, as he injured a cervical vertebra in the fall.

He originally thought he would fully recover from that injury. He had fully recovered from a similar injury (from a car crash while his mother was driving him to college) when he was still a teenager, back well before I was born. He had surgery after his later injury, but the surgery only made his condition worse--not only could he not move any of his limbs, but he also couldn't clear his throat or swallow, and he could speak only with difficulty. He spent the last six years of his life that disabled, sometimes making a bit of progress in recovering motion through physical therapy, but never making enough progress to regain the ability to walk or to eat without a gastric tube.

So, yeah, end of life care issues are tough. My dad thought beforehand that he had written down careful instructions in a personal care directive prepared years before his injury. But even though that document listed many different possible conditions, with directives for his care in each case, what actually happened to him was an edge case compared to everything on the list. It absorbed a lot of my time and attention while my children were young and I had just moved back to the United States from overseas to check how my dad was doing and keep him company when his other family caregivers were exhausted. For six years, our weekends were visits to grandpa--never much of anything else.

In the end, his transition from eventual intensive care as health issues piled up from his long-term immobility turned into a very brief stay in hospice before my dad died. (My dad died at a considerably younger age than his father before him.) I'm sure he didn't want to die that way. He wanted to walk again before he died, but that was never possible. Slow decline in health is hard to face and hard to make satisfying decisions about.

digitalengineer4• 13 years ago

Thank you for sharing. Someone I know has the same condition (hit by a car, parallelized from the neck down, not able to breath on his own). I just realized I haven't seen him is quite some time as I'm always busy in my own way. I'll correct that tonight.

gehar6• 13 years ago

> For six years, our weekends were visits to grandpa--never much of anything else.

Playing football or going to Disney World or whatever sounds like it would be more fun than sitting at home giving comfort, for sure, but being together is the main thing. You did good, which is the best anyone can do, and earned the respect and admiration of your peers.

What Broke My Father's Heart (2010)

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