You experience nearly mirrors mine with the exception of age and the circumstances of care. But the need to exhaustively advocate for even basic care was, to be honest, harder than losing my father in the end. It's painful to say, but after he died the relief my family felt from not having to fight every "care provider" constantly for every single minor thing was palpable.

You have a follow-on comment about your options being cheaper and less time-consuming. My experience also perfectly mirrors yours. My father chose literally the cheapest, smallest resource consuming (in terms of time, people, and expertise), and fastest path available today, and it seemed at every turn we were confronted with a medical professional demanding a useless, time consuming, expensive, resource intensive, activity -- only to then fail to deliver on that activity when they actually had to do it due to: expense, resources, and time.

There were times when I felt like I was talking to confused farm animals, not people with some of the highest education possible in our civilization.

> It's painful to say, but after he died the relief my family felt from not having to fight every "care provider" constantly for every single minor thing was palpable.

It's awful to even think about it, let alone articulate it, but, that year was terribly difficult on me and even worse for my mother. My grandfather was a proud man and having people need to help him with every aspect of daily living (I'll leave the details to what I suspect is not your imagination) was undignified. By the time he passed it was obvious there was no quality of life left and death was a mercy. It doesn't have to only be a mercy for the patient.

The problem is cost. You're a good grandson for fighting for your grandpa, but there's no way we can afford the level of care you're demanding for every person close to end of life. It's inherently a futile battle.

> but there's no way we can afford the level of care you're demanding for every person close to end of life

You are referencing a pernicious myth - a classic selection bias. For the majority of illnesses we don’t know whether someone is near the end of their life or not. We all “know” that people tend to have expensive care just before they die, but the selection bias occurs because we ignore the counterfactual where people have expensive care and then go on to live for many years afterwards. Edit: A study found “most people who die aren’t expected to, and many people who are expected to die don’t. In particular, less than 10 percent of those who die within 12 months had a predicted mortality above 50 percent. And if beneficiaries are ranked by their predicted mortality, the group with a high chance of dying accounted for only 5 percent of total Medicare spending, and among them about half survived in any case, perhaps in part due to the health care they received. As the study's authors conclude, ‘These findings suggest that a focus on end-of-life spending is not, by itself, a useful way to identify wasteful spending.’” https://archive.ph/gUzzO

Also “total spending on end-of-life care is only 9 percent of the total cost of health care”. Chronic condition are where costs lie.

And US healthcare costs have not really risen: https://randomcriticalanalysis.com/why-conventional-wisdom-o...

I feel you’re wrong on two directions. Sure, most people who die weren’t obviously on end of life. But those people tend not to be the ones with high end of life costs. The high cost is due to their circumstances, not the label. Second, the folks we are identifying as end of life tend to have a pretty good true positive : false positive rate. So if you’re in that bucket, you probably ought to be there.

> That one-quarter of Medicare spending in the United States occurs in the last year of life is commonly interpreted as waste.

This is the issue this paragraph is dedicated to refuting. But this thread is not about this issue. So it’s largely just an irrelevant passage. However;

> Here we analyze how spending is distributed by predicted mortality, based on a machine-learning model of annual mortality risk built using Medicare claims. Death is highly unpredictable. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%.

This quote is dumb. As a data scientist I give it an F. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%? Ok but what proportion of individuals is that? Is it 10% in which case they’re underrepresented? 5% in which case they’re average? Or .1% in which case they’re pulling in 50x their share? If we pull the criteria down to 40% what happens? What share of people who died are above 50% in the model? It’s a quote that is basically impossible to make use of on its face but is being used to push a very specific narrative.

> we don’t know whether someone is near the end of their life or not

Sometimes know, but, admitting it is harder than we want to believe.

I can pull up statistics on a foot ulcer in a geriatric patient and point out that it usually (>50%) leads to amputation and that following an amputation most patients don't live a year and get called an asshole. I realized fairly quickly that the right course was to fight to make the next 12 months - 2 years "as good as possible." Organizing care and finances (dying is expensive).

My decisions were cheaper, actually.

Sending a nurse to do a wound check daily is much cheaper than ambulatory travel to an ER (or even doctors office).

Moving him to our house was cheaper than a nursing facility.

Hospice was obviously far cheaper than any continuing care.