By Richard Knox
Every day in intensive care units across the country, patients get aggressive, expensive treatment their caregivers know is not going to save their lives or make them better.
California researchers now report this so-called “futile” care has a hidden price: It’s crowding out other patients who could otherwise survive, recover and get back to living their lives.
Their study, in Critical Care Medicine, shows that patients who could benefit from intensive care in UCLA’s teaching hospital are having to wait hours and even days in the emergency room and in nearby community hospitals because ICU beds are occupied by patients receiving futile care. Some patients die waiting.
On one day out of every six, the researchers found, UCLA’s intensive care units contain at least one patient receiving useless care while other patients are unable to get into the ICU.
More than half the time, over a three-month period the researchers examined, the hospital’s intensive care units had a least one patient receiving futile care. The study shows the ripple effects of that futile care within the UCLA hospital and in surrounding hospitals where patients were waiting to be transferred.
“It is unjust when a patient is unable to access intensive care because ICU beds are occupied by patients who cannot benefit,” the authors write.
“The ethic of ‘first come, first served,’” they say, “is not only inefficient and wasteful, but it is contrary to medicine’s responsibility to apply health care resources to best serve society.”
But the concept of “futile” care raises touchy questions. Who decides when care is futile? What if the patient’s family disagrees? What can doctors and hospitals do to avoid futility? Might efforts to avoid futile care slide toward the big R – rationing?
I talked about the study’s implications with its senior author, Dr. Neil Wenger, a UCLA professor of primary care medicine and head of the university’s ethics center. Here’s a lightly edited transcript of our conversation.
Why did you decide to study futile care?
It’s been recognized before that patients receiving treatment that doctors don’t think is of any value are taking up places while other patients are not receiving care, but it’s always been a theoretical construct. We’d juggle beds and carry on. We were never able to quantitate whether the mechanism of triage was working or not working in everyday life.
How did you pin it down?
We surveyed every critical care doctor every day on every patient on whether they were treating someone they didn’t think would benefit. Or whether they thought the patient would never wake up, not survive ICU stay, the patients’ goals could never be met, or that the burden of care grossly outweighed the potential benefit. It turned out that 11 percent of the patients were getting futile care.
I gather another 9 percent of patients were getting “probably futile” care, although you didn’t count those as part of the so-called “opportunity cost” — ICU care not provided to patients who could benefit.
It’s hard to know what “probably futile” means. Even the doctors had trouble defining it. But when we did our focus groups they said they wanted a “probably futile” category because they often categorize patients that way and then the patient goes one way or the other. Sometimes the patient gets worse and sometimes the patient, surprisingly, gets better.
You report that the ICUs were much more likely to have patients receiving futile care when they weren’t full. What is this telling you?
That doctors have the hard conversations more often and work harder at reducing the amount of inappropriate treatment when there’s a crunch on resources.
And when there’s slack in the system, futile care is more likely?
Yes. Part of the reason is that it takes a lot of time to get consensus to stop futile care. If you talk with doctors about providing futile treatment, they will say to you, “I can only fight so many battles in one day. To stop providing futile treatment to patient number 1 means I would spend less time on patients 2 through 10. So some patients continue to get futile care, but I’ll be providing better care to others.”
How could you tell if the doctors were right when they determined care of a patient was “futile”?
If we’d followed up these patients and found they went back to work or to school or could function in some way, it would really call into question these estimates of futility. But we didn’t find any of that. Two-thirds of the patients who received futile care died in the hospital. Eighty-five percent were dead within six months. The rest were in states that most patients, if they could talk with you, would say they wouldn’t want to be kept alive for. They were in a long-term care facility, severely demented, not able to recognize others, on a ventilator.
If a patient gets admitted to an ICU with the hope she might benefit and then deteriorates to the point of futility, how do you discontinue care?
Optimally, you have conversations with decision-makers to recognize what’s happening clinically and make the appropriate decision. You bring in social workers and try to make everyone understand. You provide support for those who are grieving. One tries as much as possible to have a coherent group decision to use treatment appropriately. It’s only when those fail that you get into these situations when doctors rate the care they’re providing as futile.
There’s a case here right now – someone is dying of liver disease, their kidneys have failed and the family is demanding dialysis, which will only prolong the dying process. The ICU staff doesn’t want to do it. The goal is to get consensus, to get understanding that dialysis will only provide a little extension of life. If there is no resolution, then we have a policy where you can override a family. There’s a lot of due process involved. We don’t override families without making absolutely sure that we’re doing it right.
How often does that process get invoked at UCLA?
Well, it comes close to getting invoked several times a week. But it actually gets invoked pretty rarely. I think we’ve only had two times this year. The goal is to never use that policy. First, it’s a whole lot of effort. And it takes a lot out of you. Tisha Wang, one of our ICU docs, went up against a family in order to stop providing treatment. She wrote a piece saying that the experience “took away a piece of my soul.”
Really, in the end, it’s the family that’s left and they have to be left intact and whole, feeling they did their best for their loved one. But you just can’t allow that at the expense of other patients.
What are you hoping will come out of this paper?
I’m hoping this will stimulate an open debate about whether we as Americans want our health care resources used in such a way that they sometimes don’t benefit patients while others are not receiving treatment that might help them.
This is a third-rail kind of issue. Some might say we dare not touch it. How do you confront that?
The only solution I can think of is to shed as much light on it as possible and allow the warts to show. Be very explicit about what we’re talking about – using a machine to keep someone alive who will never wake up or leave the ICU. And let the public decide if they believe that medicine should use resources toward that end, especially if there’s an opportunity cost to others. Maybe these conversations on futility are all wrong, that’s what medicine should be doing. Let’s discuss that out loud and not pretend we’re not using resources in this way.