You should never do this procedure without pain medicine," the senior surgeon told a resident. "This is one of the most painful things we do."
She wasn't scolding, just firm, and she was telling the truth. The patient needed pleurodesis, a treatment that involves abrading the lining of the lungs in an attempt to stop fluid from collecting there. A tube inserted between the two layers of protective lung tissue drains the liquid, and then an irritant is slowly injected back into the tube. The tissue becomes inflamed and sticks together, the idea being that fluid cannot accumulate where there's no space.
I have watched patients go through pleurodesis, and even with pain medication, they suffer. We injure them in this controlled, short-term way to prevent long-term recurrence of a much more serious problem: fluid around the lungs makes it very hard to breathe.
A lot of what we do in medicine, and especially in modern hospital care, adheres to this same formulation. We hurt people because it's the only way we know to make them better. This is the nature of our work, which is why the growing focus on measuring "patient satisfaction" as a way to judge the quality of a hospital's care is worrisomely off the mark.
For several years now, hospitals around the country have been independently collecting data in different categories of patient satisfaction. More recently, the Centers for Medicare and Medicaid Services developed the Hospital Consumer Assessment of Healthcare Providers and Systems survey and announced that by October 2012, Medicare reimbursements and bonuses were going to be linked in part to scores on the survey.
The survey evaluates behaviors that are integral to quality care: How good was the communication in the hospital? Were patients educated about all new medications? On discharge, were the instructions the patient received clear?
These are important questions. But implied in the proposal is a troubling misapprehension of how unpleasant a lot of actual health care is. The survey measures the "patient experience of care" to generate information important to "consumers." Put colloquially, it evaluates hospital patients' level of satisfaction.
The problem with this metric is that a lot of hospital care is, like pleurodesis, invasive, painful and even dehumanizing. Surgery leaves incisional pain as well as internal hurts from the removal of a gallbladder or tumor, or the repair of a broken bone. Chemotherapy weakens the immune system. We might like to say it shouldn't be, but physical pain, and its concomitant emotional suffering, tend to be inseparable from standard care.
What's more, recent research suggests that judging care in terms of desirable customer experiences could be expensive and may even be dangerous. A new paper by Joshua Fenton, an assistant professor at the University of California, Davis, and colleagues found that higher satisfaction scores correlated with greater use of hospital services (driving up costs), but also with increased mortality.
The paper examined patient satisfaction only with physicians, rather than hospitals, and the link between satisfaction and death is obviously uncertain. Still, the results suggest that focusing on what patients want — a certain test, a specific drug — may mean they get less of what they actually need.
In other words, evaluating hospital care in terms of its ability to offer positive experiences could easily put pressure on the system to do things it can't, at the expense of what it should.
To evaluate the patient experience in a way that can be meaningfully translated to the public, we need to ask deeper questions, about whether our procedures accomplished what they were supposed to and whether patients did get better despite the suffering imposed by our care.
We also need to honestly assess our treatment of patients for whom curative care is no longer an option.
I had such a patient. He was an octogenarian, but spry, and he looked astoundingly healthy. He'd been sent to us with a newly diagnosed blood cancer, along with a promise from the referring hospital that we could make him well.
But we couldn't. He was too old to tolerate the standard chemotherapy, the medical fellow on duty told him. When I came into his room a little later he said to me, with a stunned and yearning look, "Well, he made it sound like I don't have a lot of options." The depth of alienation, hopelessness and terror that he was feeling must have been unbearable.
The final questions on the survey ask patients to rate the hospital on a scale from worst to best, and whether they would recommend the hospital to family and friends. How would my octogenarian patient have answered? A physician in our hospital had just told him that he would die sooner than expected. Did that make us the best hospital he'd ever been in, or the worst?
Hospitals are not hotels, and although hospital patients may in some ways be informed consumers, they're predominantly sick, needy people, depending on us, the nurses and doctors, to get them through a very tough physical time. They do not come to us for vacation, but because they need the specialized, often painful help that only we can provide. Sadly, sometimes we cannot give them the kind of help they need.
If the Centers for Medicare and Medicaid is to evaluate the patient experience and link the results to reimbursement, it needs to incorporate questions that address the complete and expected hospital experience. It's fair and even valuable to compare hospitals on the basis of how well they maintain standards of patient engagement. But a survey focused on "satisfaction" elides the true nature of the work that hospitals do. In order to heal, we must first hurt.
