Hacker News Reader

I went through this with my then 94-year-old grandfather a couple of years ago.

I ultimately came away from the situation realizing that things only got done when you actively threaten people and force them take action.

Doctor doesn't want to properly follow up on a stage-iv foot ulcer and home wound care misses scheduled appointments? Ok, we're going to the ER and telling them that the doctor doesn't respond to his service and home care didn't show up. Had to do that several times but eventually doctors and home care got tired of getting yelled at (by me and by whomever at the hospital system they reported too, because, ER staff was unhappy) that home care and doctors visits were much more regular.

Sadly 94 with a foot ulcer only ends one way and in the hospital post-amputation doctors were deflecting responsibility for his ongoing care and basically leaving him on a post-op ward with minimal PT/OT and extremely limited interaction due to COVID restrictions. A JACO complaint resulted in a meeting at the hospital with about 16 doctors in attendance. I started the conversation by telling them "Your inaction is killing my grandfather and before we leave here today we will find a solution because I will not allow you to murder him". My aunt (who was there) described me as "a bit much" but within 24 hours he was moved home with appropriate support, multiple PT/OT daily, 24-hour home care, nursing visits, etc.

Sadly 94 with an amputation only ends one way and within 6 months he reached a point where we knew the end was near. We enrolled in a home hospice program but the end came quickly. Hospice, despite promising 24/7 coverage and promising quick response times, failed in the end and despite repeated calls over his final day nobody showed up. Eventually, only threatening to call 911 (because we were desperate) and saying we would tell 911 that hospice care was non-responsive resulted in a nursing dispatch, but, it was too late.

The American health care system seems to require one to stand up and scream sometimes to get help. Doctors, nurses, etc are individually great people but they all have their own myopic opinions of the situation which my grandfather was not the center of. Getting things done requires reorienting them and making them realize you will not settle and that medical opinion is both only an opinion but also only one part of a large equation. (Yes, perhaps, PT/OT techs in Dr X's experience are better in sub-acute rehab facility X, definitely they will do 3x daily instead of 2x daily, but being completely isolated (no family visits due to COVID) is a completely dominating concern and not even a medical one.)

Every regret I have from that year is from not pushing people harder, everything I'm proud of is from when I did.

View on HN

That one-quarter of Medicare spending in the United States occurs in the last year of life is commonly interpreted as waste. But this interpretation presumes knowledge of who will die and when. 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%. The simple fact that we spend more on the sick-both on those who recover and those who die-accounts for 30 to 50% of the concentration of spending on the dead. Our results suggest that spending on the ex post dead does not necessarily mean that we spend on the ex ante "hopeless."