5 ms·

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 w

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.

throwaway6734 4y ago
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.
- AdamJacobMuller 4y ago
  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.
- robocat 4y ago
  > 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 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-on-health-care-is-wrong-a-primer/ https://randomcriticalanalysis.com/why-conventional-wisdom-o...
  - oneoff786 4y ago

throwaway6734 4y ago

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.

AdamJacobMuller 4y ago
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.
robocat 4y ago
> 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 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-on-health-care-is-wrong-a-primer/ https://randomcriticalanalysis.com/why-conventional-wisdom-o...
- oneoff786 4y ago