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Hopelessness can’t be predicted within the first three days a brain injury, says Dr John Whyte. Yet, as he has learned in decades of working with disorders of consciousness (DOC), many doctors assume otherwise.

Faced with an unconscious head trauma survivor and their devastated loved ones, all too often decisions are taken to unplug the machine; halting potential recovery journeys before they’ve begun.

“Research has shown that a large proportion of the deaths after a severe brain injury are within the first 72 hours of the injury,” says Whyte.

“The family and caregivers make the conscious decision to withdraw care and let the person die, presumably based on the shared perception of the acute care doctor that the situation is hopeless.

Needlessly pessimistic?

“The problem is, we have good data which shows that patients who look hopeless in the first three days can go on to be independent.”

The guideline also supports the use of Amantadine, a medication commonly associated with Parkinson’s treatment, in traumatic DOC. This was the direct result of a study Whyte was involved in.
“We published the first randomised control trial that actually showed that a drug made a difference in the rate of recovery. Before that, everybody was giving drugs off label and crossing their fingers, but nobody had good data.
“I hate to even say it out loud, but it took us 14 years to publish the trial because we had to build the research network and get funding to do the trial.
“Then it took us six years to enrol 184 patients, so that was tremendously inefficient, because we were cobbling together small programmes that only exist rarely.
“If policy change happened so that large rehab institutions were treating these patients routinely, the pace of research would dramatically accelerate.”
The Amantadine findings have been adopted into practice with “almost every patient with a traumatic disorder of consciousness being given the drug soon after injury”.
Other parts of the guideline which require more significant behavioural changes have not yet been heeded, however.
“Published evidence doesn’t instantly lead to healthcare behavioural change. It takes active work to get people to change their practices and there’s an overarching issue of how do we get translation to happen at a faster rate.
“But there are additional obstacles here in the US. We are terribly concerned about the overall cost of healthcare period. Anything that involves spending more rather than less is going to be met with initial resistance.
“It would be great if we had really good data on cost effectiveness. If we had evidence that spending money now will save money in the long run, that would facilitate the political policy conversation.”
Whyte believes access to intense rehabilitation would indeed save in the long run, especially in reducing acute care hospital visits.
“Some patients could be going home instead of being cared for in institutions so that would save money.
“Also, you have patients bouncing back and forth between nursing homes and acute care hospitals for years, getting acute things treated that don’t ultimately move them ahead in any way.”
But in the US, the economic argument is clouded since “the pot of money that pays to take care of you long term is not the same pot of money that pays for your health insurance in the short term”.
Whyte says: “Many people are getting their health insurance from a private company – an employer-based company.
“Once a year, they can move to a different insurance plan but if they lose their job, which they will when they have a disorder of consciousness, eventually they will move off any of those private plans onto a government one.
“So the bottom line is that the company paying for their early healthcare won’t be paying for their long-term costs. Why would the insurer care about the two, three or five-year cost of recovery?”
There are also institutional barriers to improving DOC care in the US in line with the recent guideline, he believes.
For example: “If I’m working in an intensive care unit, we are being paid a capitated rate for every patient with severe brain injury, and therefore we need to discharge that patient as quickly and efficiently as we can.
“There are a million nursing homes that I can choose to discharge that patient to but there might only be one or two rehab facilities.
“They may or may not have a bed the day that I’m ready to discharge the patient, while my hospital administrator is breathing down my neck to get this patient out of here. So there are implications for rehab capacity.”
Also, the majority of rehab facilities with brain injury programmes are not currently set up to accept DOC patients.
“They don’t have expertise in that very challenging population.
“If and when the policy changes, there will need to be a big gearing up to enhance the skills of rehab providers to care for this patient population, because most don’t know how.
“So it’s a very complicated problem that will require changes in payment, institutional capacity and provider confidence.
“But at least now, for the first time, somebody other than providers who are totally invested in this patient population are saying the data justifies [change].”
Hope for the future
Despite the considerable challenge ahead in opening up access to intensive rehab for people with DOC, Whyte is upbeat about the outlook for DOC patients generally.
“I’ve seen tremendous progress in my lifetime, so that gives me optimism that there will still be more. When I started, there was no relevant data about any of this.
“Nobody knew how much patients recovered, nobody could list their medical needs, nobody could tell you what their long-term prognosis was and nobody could list a treatment that had evidence that it would work.
“All of that is different now; it’s not perfect, but we have meaningful answers to all of those questions.
“There’s a lot of research going on around improving the detection of consciousness, because we know that we miss people who are conscious that we think are unconscious.
“There’s been a lot of work on both behavioural rating scales but more recently work using functional MRI, or EEG-based techniques, to actually show that patients who have no behaviour at all that looks conscious, can sometimes be found to have thinking that is.
“That’s an intriguing finding that we don’t know what to do with yet.
“What are you going to do with those patients? What’s the rehabilitation strategy when the person has no movement that can connect to communication devices or anything like that? We’re a long way from being able to communicate with brainwaves.”Whyte (pictured) is founding director of the Moss Rehabilitation Research Institute in Philadelphia and the soon-to-be recipient of the Gold Key Lifetime Achievement Award from the American Congress of Rehabilitation Medicine.

He has been working with, and extensively researching, DOC for over 35 years, and has seen much progress around diagnosis and treatment in that time.

But looking at America’s general approach to DOC patients today, he sees a hugely concerning picture.

The US is, of course, affected by the big DOC challenges faced universally – such as misdiagnosis which, according to a systematic review published in the British Medical Journal in 2016 (Kondziella et al), could occur in as many as four in 10 vegetative state cases.

Pessimism and a sense of treatment futility in acute care that sees lives ended arguably prematurely is also a global issue.

A major concern specific to his native US, however, is the care pathway currently taken by most DOC patients.

Health policy, funding changes and a general lack of research have conspired to create a system which Whyte believes is failing DOC patients who may have a genuine shot at recovery.

It’s a system in which the majority of DOC patients are discharged from acute hospitals to non-specialised nursing homes within weeks of their injury.

This, says Whyte, is denying thousands of people with the potential to regain lost functions and independence, access to the intensive rehab they need.

Unsuitable surroundings 

“A nursing home in the US is not just a place that isn’t providing intensive rehabilitation, it’s a place that isn’t providing intensive medical management either.

“You don’t have to have a physician rounding on patients every day or specialty consultations. You can transfer a patient who gets sick to an acute care hospital when that happens, so you don’t have to have backup in your institutions.

“It’s not a place where you should send a medically-fragile, complicated patient who needs intensive medical oversight.”

Today’s situation has been decades in the making.

When Whyte’s career began in 1984, care was built around a fee-for-service health insurance system. This meant providers charged daily for the services they delivered.

“A number of for-profit healthcare companies I believe saw DOC patients as good business. They were impaired for a long period of time, and some of them indefinitely.

“You could continue to dream up treatment goals and give them physical therapy day after day and charge for it.

“I saw patients who were recently injured and progressing quite nicely, and those who had been injured years ago, and weren’t changing at all.

“Clinicians were writing active treatment goals for all of them as though they were all the same – and the insurance companies were getting billed as though they were the same too.

“At some point, the payers said ‘we’re paying a lot of money and it’s not really clear that this is cost effective’. At that time there wasn’t data to say what we were doing was or wasn’t cost effective.

“They basically decided that it wasn’t cost effective to pay for this for anyone.”

And so began what Whyte calls an “historical pendulum swing” towards the current situation.

Increased pressure for results 

By the end of the 1980s, healthcare was increasingly being charged for in more capitated ways.

In acute care, a set total amount, rather than daily fees, might have been billed for looking after a heart attack patient, for example.

This intensified the pressure to deal with patients as efficiently as possible and to justify the cost of treatments and therapies.

“In this transition, payers came to the conclusion that paying for rehabilitation for unconscious or minimally conscious patients was not cost effective.”

Misconceptions about DOC-related rehabilitation also contributed to its demise.

Whyte says: “The payers also incorporated the logic that rehabilitation as an active service requires that patients consciously participate in it.

“Patients learn how to walk, operate a wheelchair and use a memory notebook to keep track of their appointments et cetera – this is the familiar model of rehabilitation, which assumes that the patient needs to be an active participant in the process.

“But that’s one model and that’s assuming that if they can’t be an active participant, then the whole process is worthless, which we are increasingly having data to say that’s not the case.”

Many healthcare payers insist on only funding admission to acute inpatient rehabilitation programmes if the patient is at least minimally conscious and undergoing identifiable functional improvement.

As Whyte notes, this is particularly challenging since a number of studies show that misdiagnosis of a patient’s level of consciousness is “very frequent in the hands of non-specialists”.

A paper produced by Whyte and Risa Nakase-Richardson in 2013 analysed existing research findings on outcomes, comorbidities and care needs relating to DOC.

It found evidence in several articles of a high burden of medical comorbidity and high rates of rehospitalisation in DOC cases.

It also found that the rate of these complications can be reduced with active medical management and, possibly, brain injury expertise; both of which are lacking in most nursing home environments.

Perhaps the headline finding was that: “Collectively these studies suggest that a large proportion of patients with DOC who are admitted to inpatient rehabilitation regain consciousness and even orientation; and that their further recovery can go on for more than two years and that structured programmes that care for patients with the worst prognosis may result in surprisingly positive outcomes.”

Reasons for optimism 

Not all DOC patients are moved into nursing homes in the US, and Whyte is among the relatively small band of experts working with DOC clients in specialist rehab facilities. This work has enabled some useful research.

“In one of our own studies, we asked ‘what’s the trajectory to becoming more medically stable and is it closely related to how long ago the patient was injured, or how long ago they arrived at the rehab hospital?’

“The answer is that there is no relationship with how long ago the person was injured and a strong link to how long ago they got to a rehab hospital.

“This gives us some evidence that it’s not just if you wait, they’ll get better, but if you know what you’re doing, identify the problems, treat them and manage them, then they get better. But none of this is going to happen in a nursing home.”

Part of the reason that health insurance companies are so pessimistic about DOC patients, says Whyte, is not just that they think they’re wasting money, but that they’re wasting it on people who can’t get better, no matter how much money is spent on them.

“But this is simply not true in a lot of cases. We’ve shown that even when you admit a patient to acute rehab in an unconscious state, they are likely to regain consciousness while they’re in rehab.

“Some of them are likely to even resolve their confusion and start becoming much more actively engaged while they’re in rehab.

“By five years, of the patients who were admitted to rehab while unconscious, about 20 per cent are living independently or rated
as employable.

“So it’s a minority but not a trivial minority. And a lot of the other patients are getting better in terms of daily living and mobility, though they’re not to the point where they could be independent or employed.”

The odds of recovery for DOC patients taken on the well-worn path from hospital to nursing home may be much slimmer than those who receive intensive rehab.

In fact, such statistics are not known, partly because the current situation has thwarted research, as Whyte explains.

“That patients with DOC have been substantially triaged to nursing homes has had the unintended consequence of making it next to impossible to do research because most nursing homes in the US have no research infrastructure.

“It’s also the case that most nursing homes aren’t specialised for patients with DOC. They can’t afford to be because they’re expensive patients to take care of, so no home has a whole bunch of them [together].

“This means if I wanted to do research in nursing homes, I’d need almost as many nursing homes as I had patients in my study, because there’s going to be one patient in this nursing home and two patients in that one.

“It’s essentially infeasible to learn about disorders of consciousness from patients who are in nursing homes.”

An ideal solution to America’s DOC challenge would be a randomised controlled trial in which intensive rehab and nursing home approaches are compared, to prove to payers which is best.

“The payers would like to see a trial in which you take a whole bunch of patients with recent serious brain injuries and send half to an intensive rehab programme, and the other half to nursing homes like we’re doing in the US now.

“You could then measure both the cost and the long-term outcome of those two systems.

“Everyone agrees that that would be the most rigorous way of answering this question, but pretty much everyone also agrees that it is never going to happen.

“For insurers to ask for that is sometimes a disingenuous request as they know it’s never going to happen and therefore they will never change their policy.”

Logistical problems and the sheer cost of such a study make it unlikely and focus has instead been on “triangulation from other sources of evidence”.

This has culminated in the issuing of an evidence-based clinical guideline last year.

“We pulled a vast amount of literature together on diagnosing DOC, predicting prognosis in DOC, and treatment of patients with DOC.

“For the first time, there was sufficient data to make strong statements about many important things that have policy implications.”

Whyte was involved as an author, while it was jointly produced by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research’s (NIDILRR’s) Traumatic Brain Injury Model System.

Sweeping changes needed

It concluded that the combined weight of research mandates changes in clinical care and healthcare policy for the DOC patient population.

Among other things, the guideline supports access to specialised multidisciplinary rehabilitation for patients with DOC and notes that the pessimism that drives early withdrawal of care is not warranted by the longitudinal data.

“One of the points in the new guideline is that prognosis can’t be accurately predicted early, and therefore, big decisions should not be based on the notion that it can.

“Another is that there is sufficient evidence now that these patients can benefit from, and need, high intensity complex rehabilitation services.

“This review itself didn’t find randomised controlled trials of the kind that we would ideally want, but essentially, used the same logical argument, that we have a high burden of complex disease and a high potential to get better.

“We know that in other situations which are complex and need intensity, it helps to concentrate people in a facility where expertise can be developed, and so on. So putting all the evidence together, these highly respected and influential bodies basically said that these people are candidates for intensive rehabilitation and should have access to it.”

The guideline also supports the use of Amantadine, a medication commonly associated with Parkinson’s treatment, in traumatic DOC. This was the direct result of a study Whyte was involved in.

“We published the first randomised control trial that actually showed that a drug made a difference in the rate of recovery. Before that, everybody was giving drugs off label and crossing their fingers, but nobody had good data.

“I hate to even say it out loud, but it took us 14 years to publish the trial because we had to build the research network and get funding to do the trial.

“Then it took us six years to enrol 184 patients, so that was tremendously inefficient, because we were cobbling together small programmes that only exist rarely.

“If policy change happened so that large rehab institutions were treating these patients routinely, the pace of research would dramatically accelerate.”

The Amantadine findings have been adopted into practice with “almost every patient with a traumatic disorder of consciousness being given the drug soon after injury”.

Other parts of the guideline which require more significant behavioural changes have not yet been heeded, however.

“Published evidence doesn’t instantly lead to healthcare behavioural change. It takes active work to get people to change their practices and there’s an overarching issue of how do we get translation to happen at a faster rate.

“But there are additional obstacles here in the US. We are terribly concerned about the overall cost of healthcare period. Anything that involves spending more rather than less is going to be met with initial resistance.

“It would be great if we had really good data on cost effectiveness. If we had evidence that spending money now will save money in the long run, that would facilitate the political policy conversation.”

Whyte believes access to intense rehabilitation would indeed save in the long run, especially in reducing acute care hospital visits.

“Some patients could be going home instead of being cared for in institutions so that would save money.

“Also, you have patients bouncing back and forth between nursing homes and acute care hospitals for years, getting acute things treated that don’t ultimately move them ahead in any way.”

But in the US, the economic argument is clouded since “the pot of money that pays to take care of you long term is not the same pot of money that pays for your health insurance in the short term”.

Whyte says: “Many people are getting their health insurance from a private company – an employer-based company.

“Once a year, they can move to a different insurance plan but if they lose their job, which they will when they have a disorder of consciousness, eventually they will move off any of those private plans onto a government one.

“So the bottom line is that the company paying for their early healthcare won’t be paying for their long-term costs. Why would the insurer care about the two, three or five-year cost of recovery?”

There are also institutional barriers to improving DOC care in the US in line with the recent guideline, he believes.

For example: “If I’m working in an intensive care unit, we are being paid a capitated rate for every patient with severe brain injury, and therefore we need to discharge that patient as quickly and efficiently as we can.

“There are a million nursing homes that I can choose to discharge that patient to but there might only be one or two rehab facilities.

“They may or may not have a bed the day that I’m ready to discharge the patient, while my hospital administrator is breathing down my neck to get this patient out of here. So there are implications for rehab capacity.”

Also, the majority of rehab facilities with brain injury programmes are not currently set up to accept DOC patients.

“They don’t have expertise in that very challenging population.

“If and when the policy changes, there will need to be a big gearing up to enhance the skills of rehab providers to care for this patient population, because most don’t know how.

“So it’s a very complicated problem that will require changes in payment, institutional capacity and provider confidence.

“But at least now, for the first time, somebody other than providers who are totally invested in this patient population are saying the data justifies [change].”

Hope for the future 

Despite the considerable challenge ahead in opening up access to intensive rehab for people with DOC, Whyte is upbeat about the outlook for DOC patients generally.

“I’ve seen tremendous progress in my lifetime, so that gives me optimism that there will still be more. When I started, there was no relevant data about any of this.

“Nobody knew how much patients recovered, nobody could list their medical needs, nobody could tell you what their long-term prognosis was and nobody could list a treatment that had evidence that it would work.

“All of that is different now; it’s not perfect, but we have meaningful answers to all of those questions.

“There’s a lot of research going on around improving the detection of consciousness, because we know that we miss people who are conscious that we think are unconscious.

“There’s been a lot of work on both behavioural rating scales but more recently work using functional MRI, or EEG-based techniques, to actually show that patients who have no behaviour at all that looks conscious, can sometimes be found to have thinking that is.

“That’s an intriguing finding that we don’t know what to do with yet.

“What are you going to do with those patients? What’s the rehabilitation strategy when the person has no movement that can connect to communication devices or anything like that? We’re a long way from being able to communicate with brainwaves.”