Healthcare has been an area of interest for me, but recently I've had the occasion to view our current healthcare system from a different position. That is to say, from lying on my back. (I wrote the whole story in my travelogue for 2008.) Thinking about this experience, my list of top priorities for improving our healthcare system would start with the following 3 topics.
(1) Utilization. Had I been the objective observer or if I had been my own family member, I would almost certainly have supported all the medical decisions made about my care from calling 911 through the second CT scan to providing noon lunch as a clinical trial of my GI involvement. And yet, in retrospect, the only real difference between what actually happened and dropping me off at my own house is $9,000 of hospital charges, $940 in charges by the radiologist, and whatever the other doctors end up billing.
Doctors don't like to take risks, especially of the kind that open the door to malpractice liability; the only way to reduce these costs would be to improve their ability to diagnose. The greater cost of the CT is supposed to be justified for just that reason, but nothing in medicince is ever so simple. In my specific case, had X-rays never been discovered the doctors would have known just as much and kept me overnight just the same -- but we would have saved about half the cost.
So, do we structure healthcare payments to encourage the use of CT scans? Probably ... but from a public policy point of view we'd really like better data on how much their use improves care and (we hope) reduces the overall cost to society of providing quality care. Certainly, we need more justification than is given by my story.
My experience shows that you can't rely solely on anecdotes when adjusting the way we pay for healthcare.
(2) Patient access to information. Somewhat differently from HIPAA and s. 146.81 Wis. Stats., I define privacy of health information as the individual retaining ownership of the data even while a healthcare provider or payer has possession of it. I'm not sure that this point of view would make any difference in how my healthcare information was managed either during or after my hospital stay. I think it might have increased my presumed standing in conversations with the providers and data custodians.
After the fact, I've been able to obtain records of my stay at the hospital. Of course, I knew the system and some of the people at St V's. The Animal Control report was also easy to obtain, for 25 cents seems per page. The fire department records are somewhat more difficult.
During the event, my experience was more mixed. As the patient I already have the right to direct my own care, but exercising that right presupposes information about both the observations made and the decisions coming up. Nurses were generally very good at telling me what was happening at the moment, but I felt that I didn't have full confidence about the orders because I lacked full information. It's hard to fault anyone for this before 6:15 or so, since I was still not quite consistently forming reliable memories until then. (You can see that in my story when the hospital was being chosen.) After that, I would have preferred to be consulted about my course of treatment.
Would that have changed the course of my hospitalization or the costs? Most likely there would have been no practical changes over those 22 hours. So, speaking only from my one experience, I can't say that further reforms in this area would have any significant effect on healthcare costs or quality. Still, I have to wonder whether better conversation with the patient and family might not focus the care more appropriately to the specific needs of that patient.
(3) Family. Speaking of family -- when I was very young I had parents and siblings, plus grandparents, aunts, and cousins all living in Green Bay. That's the kind of ideal family situation that is recognized by the law. Today my nearest blood relative is a cousin living outside of Appleton. So when my friend Travis came into the ER, it was a little bit troubling to have his presence questioned. ("Is he just a friend?") Travis and his dad are the closest thing to family I have in Brown County. Shouldn't there be some way to designate intentional family with standing under the law? Somebody in the county should have some kind of presumptive right to come into the hospital and see me, even - no, especially - when I'm not completely in control.
Beyond the personal comfort of having friends available to a person in need, friends help the patient - me, to be specific - to think through my situation. That can help give both confidence and clarity to the patient's direction of his own health care. This connects the rights of intentional family with the points under item (1).
We do have the POA-Healthcare, but this addresses a different concern. It doesn't have any legal effect at all unless and until a person is designated as being incapacitated. And it grants more power than simply the right to be present with me in the hospital. A different status is needed for that purpose.
The reason that I don't jump on the healthcare bandwagon with more enthusiasm than I do -- I'm up there, but I keep wondering whether the band is playing too loudly -- is because my own observations raise a lot of questions that aren't being addressed by the proposed solutions. Let's go ahead with the proposals already on the table, recognizing that other concerns also exist and may also need legislative change as part of their solution.