Map of life expectancy at birth from Global Education Project.

Wednesday, July 28, 2010

JAMA gets whacked with the newspaper

for hiding this behind the subscription wall. This is exactly the sort of thing the public needs to know about, think about and discuss. The basic story Dr. Reuben tells is simple. An 89 year old woman who is already frail and requires 24 hour care shows up at the hospital with symptoms of a stroke -- severe weakness on the right side of her body and inability to speak. She quickly develops breathing difficulties and the doctors insert a breathing tube. They do an angiogram and find a blood clot in a cerebral artery, but they can't remove it. She ends up on a ventilator, and unresponsive.

Her son, however, doesn't want to give up hope so he makes the doctors insert a permanent breathing tube and a feeding tube. Two months later, she is transferred to a long-term care facility.

Dr. Reuben contrasts this with the case of an 81 year old homeless woman with Parkinson's disease who has a urinary tract infection, but who has exhausted the 100 day Medicare limit for post-acute rehabilitation so they just have to send her back to a shelter, rather than the skilled nursing facility where she really should go. We pretty much take this limitation for granted. This woman is obviously sick, but she's thinking, feeling and interacting.

So take a look -- the 100 day limit is obviously rationing, and it's rationing that doesn't make any evident sense. But the woman with the stroke is hospitalized, so there's no such limit. As Dr. Reuben points out, 1 week of the 8 she spent in the ICU costs more than health insurance for a family of 4 for a full year. Many families have no such insurance.

So this is rationing as it practiced today in the United States. And it is totally nuts. We are rationing, we will continue to ration, we will ration more and more. The question is not whether we ration health care, it is whether we do it with at least some consideration of justice, humanity and plain old reason. People who insist that it is somehow immoral, or socialist, or oppressive, to want to change what we are doing now either haven't stopped to think; or they are simply deeply evil people who figure they have theirs and the rest of us can just go ahead and die a horrible death.

Yes, ex-Governor Palin and Hal Scherz, M.D., I'm talking to you.


kathy a. said...

i think the first case is a good example of why families need to have discussions about care long before the need arises. most people would strenuously object to that kind of intervention if they had a devastating stroke at the age of 89, and already required extensive care. family members and the doctors also need to have frank discussions about the prospects for recovery, and about quality of life.

my mother was younger when she had her devastating stroke, but my sister and i jointly held the power of attorney for medical care, and although we hoped for recovery, we put a DNR order in place soon thereafter. this was consistent with things she had said years earlier, as well as her wishes as expressed in a living will.

mom ended up not regaining mental abilities, and developed multiple medical complications (she also broke a hip when she fell during the stroke, and there was just a cascade of trouble). we took them one at a time, hoping for the best; but about 7 weeks in, things had gone to a point where we decided on hospice care rather than trying surgery that could kill her followed by extraordinary measures to keep her body alive.

kathy a. said...

p.s. -- these decisions seem like no-brainers, because we had some fairly explicit instructions. i had also been my grandmother's caretaker during her long decline, and had made that DNR decision. and our father had died a few years earlier -- his DNR decision was his own.

but even in those circumstances, it is naturally a weighty decision to decline treatment. some of the doctors we encountered were unhelpful -- one saying we would "have" to do surgery, implant a feeding tube, etc.; another was unavailable and unhelpful when we needed information, and we fired him. several others were quite helpful, but we needed to make clear that we wanted information, and that we were not in the "do everything at all costs" camp.

the hospice people were absolutely the best and most helpful, once we got to that point.

kathy a. said...

it is unconscionable to send patient #2 back to the shelter. i suppose the good news is that the 100 day medicare limit on rehab starts over when a patient is sent back to the hospital -- as this patient could be without proper care. but then you've got extra hosptial costs, a loss of continuity of care, plus the trauma to the patient of being cast out, dragged back in, probably starting over with a new medical team, etc. this is a callous and inefficient way of dealing with real health needs.

Cervantes said...

Indeed. But I do think that patient #1 presents a difficult problem from a policy perspective. She is not brain dead or strictly speaking vegetative. She cannot speak and does not respond to verbal stimuli but apparently she does respond to tactile stimuli. She is receiving only life support. It would be a big step to declare that the decision has to be taken away from her son and given to, you guessed it, a death panel. I believe the legal situation in the UK would be similar to what it is here, but the cultural norms may be different.

Does anybody know for sure?

kathy a. said...

a parent's death is a big deal. i do not advocate taking legal decisionmaking away from next of kin. who pays, and under what circumstances, are different questions.

what i do advocate is [a] having these discussions well in advance of need, [b] helping next of kin understand the situations, options, and what really a certain decision means (e.g., CPR means possibly broken ribs, etc.), and [c] having more open discussions about these kinds of decisions.

from my point of view, months or years of suffering on artificial support with no hope of recovery is terrible; letting a natural death happen is kind. nothing but a response to tactile stimulation (this testing is along the lines of poking someone with a pin to see if there is a response) is not a life most people would choose. especially at age 89.