When the Question is ‘Can You Fix Me, Doc?’

As a physiatrist who specializes in spasticity due to neurological conditions, Francois Bethoux, MD treats patients who have a wide variety of conditions and emotions anchored to time: Some long to return to a previous version of themselves, while others worry about what’s to come.

Dr. Bethoux’s patients come to him seeking rehabilitation and a bright prognosis. The most difficult conversations he has take place when patients with severe loss of ability to move and function ask about how much, if any, functional improvement they can achieve.

“Sometimes what I hear from people when I ask what they are hoping to achieve during our visit is ‘Well, can you fix me?’ And sometimes they say it with humor, with a smile, but the hope is there,” he says. “And sometimes I have to tell them that this is something we cannot achieve.”

Dr. Bethoux is Chair of Cleveland Clinic’s Department of Physical Medicine & Rehabilitation. He is one of five physicians interviewed for a series of articles in Consult QD on delivering difficult news – what clinicians experience and how they approach discussions for the best possible outcomes for their patients.

Different challenges for different conditions

Consult QD: Describe your practice and how people end up in your clinic.

Dr. Bethoux: I subspecialize in treating people who have spasticity. That would be stiffness and spasms due to a neurological condition. They may have had these conditions since birth, like cerebral palsy. They may have acquired these conditions later. Or the condition may be the result of an acute event, like a stroke, a brain injury or a spinal cord injury.

Then there are chronic progressive conditions, like multiple sclerosis, that cause spasticity, and people with these conditions may also end up in my clinic.

These different groups are important because there are distinctions in how they feel about their goals. If somebody has been relatively healthy most of their life and then has an acute event, they often refer to their prior “normal” and their desire to return to normal, which is understandable and totally human.

For people with a chronic condition that is worsening over time, they may have the desire to be closer to what their previous normal was, but they also might be concerned that things will get worse over time and want to know how we can prevent that. In this context, keeping symptoms and the ability to carry out activities stable is a very valuable goal.

These are not perfectly defined categories. For example, we don’t speak enough about aging with cerebral palsy. For many people, aging with cerebral palsy is more difficult than aging without cerebral palsy. The body has already had some difficulty over time, and if you add aging over it, then that’s where somebody who has been able to walk most of their life gradually becomes unable to walk. That brings you back to a scenario where there is a before and after.

We might see somebody who has a severe spinal cord injury that makes them unable to move their legs, and they would like to walk again. We can say, well, walking on your own may not be feasible. Or the patient might be somebody who has multiple sclerosis and lost the ability to walk five years ago. They might come to us and say, “If my legs loosen up, then I’m pretty confident I can walk again.”

And sometimes, based on their history, test results and what I see on my examination, I realize that that’s not possible.

What is your approach in that situation?

The dilemma becomes whether to abruptly state, no, that’s not feasible, and tell the person to more or less deal with that news, or to take a more gradual approach by expressing some doubts, explaining why, and then telling them we can try this or that.

My natural tendency to is to take the less-abrupt approach, but I’ve found that sometimes it actually doesn’t fulfill the purpose, because then the person, who hasn’t heard “this is not possible,” thinks it is possible. If I try five or six interventions and then have to tell them it’s not going to be possible for them to walk again, have I been leading them on? Have I been lying by omission, and letting them entertain a dream or a goal that I knew couldn’t be achieved the way they saw it?

So over time, I’ve become more adept at trying to say things the way they are, or the way I think they are, but in a way that is respectful of the person.

I also try to convey the message that even though a goal like walking again is not achievable, other aspects of their mobility, comfort or ease in doing their daily routines may improve significantly.

The importance of questions

What do you think are the essential elements of delivering this sort of news to patients?

I ask a lot of questions, not only about how the person can function, but also about their personal story, and how their environment is – their human environment, their physical environment, what kind of adjustments they may have made, whether they work, etc. This is so that I can try to deliver the news in a way I hope can get through to the person, and that can be truthful and empathetic. This can also help propose other more achievable goals that can be meaningful to the person.

Is part of the challenge that you may have your own questions about how well they can do?

Exactly, yes. Some of it is try-and-see. And believe me, I always want to give the benefit of the doubt. But what I would not want to convey is that it’s going to be easy. I try to introduce nuance. Sometimes I tell my patients what I can promise is that I will try my hardest to help you along the way, but I cannot guarantee the results.

The role of emotions

What’s the range of reactions you see when you deliver difficult news?

There’s a lot of emotion. It’s not always necessarily expressed outwards; it could be kept inside.

Some may have done some processing already. Some may already be seeing a psychologist or a counselor to help them deal with what we call adjustment to disability. It’s not always necessarily very vivid and extreme emotions, but sometimes it is.

And it’s important, I think, to let the emotions play out and to acknowledge them.

What kinds of things complicate this process?

Not to bash the internet, necessarily, but you can go online and see that some websites promise “miracle treatments” to restore function, when these treatments are still being studied, or haven’t been researched at all. Or you’ll read that it’s very important that you believe, because if you don’t believe you’re going to get better, then it’s your fault that you’re not getting better.

I certainly don’t want to go against the positive attitude, but this underlying text that if you didn’t achieve, maybe that’s because you didn’t believe enough, ignores the realities that sometimes there are things we can’t heal or modify.

The need for external resources

Even if a certain intervention may not work, the patient needs to be able to gather enough resources to try it while also understanding the realities. That’s a lot to ask of a patient, isn’t it?

Which is why we try to pull in external resources. I often tell my patients “That’s a whole lot for one person to deal with, and we don’t all have to be Superman or Superwoman.”

So we hope there’s a close circle around the person – the family or sometimes the extended family. Sometimes it’s friends, or it could be a caregiver who is not a family member. And then it could be a psychologist, a counselor or a psychiatrist. Or a spiritual guide.

I would say that rehabilitation professionals, by training and experience, have learned also to approach these issues, and we try our best to be one of these external resources.

What else should we know about what you bring to difficult discussions with patients?

When somebody has a disability, many things are more difficult. A patient may want to try a procedure, a device or a treatment, and then their insurance may deny it. I feel that part of my role is to try, if I’m given the opportunity, to talk to the insurance company and explain why this is important and why I think it’s an effective use of healthcare dollars. Sometimes the person may have difficulty finding a place to get their care that is accessible and closer to where they live, because of difficulty getting transportation.

So it’s not just about prescribing something. I want to be a resource for them as well as to help them along the way. I see it less of a one moment snapshot as a bit of a journey. And I feel that it’s a privilege for me to be able to accompany a patient on some part of their journey.