What Broke My Father's Heart (2010)
nytimes.com
nytimes.com
Or you could stop trolling.
We're already seeing many advancements in earlier detection as well as reduction in symptoms for the issues you mention, if not improved prevention.
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.
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.
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.
Quality of life is all in the nerves. Avoiding dementia, Alzheimer's, paralysis, blindness, deafness, ... It's much harder.
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...
It doesn't matter who pays, the question still exists. Where to spend finite resources?
http://en.wikipedia.org/wiki/Quality-adjusted_life_year
"Under certain methods, such as the EQ-5D, QALY can be negative number."
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.
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.
Have you written your living will yet?
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...
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.
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.
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.
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.
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.