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Detecting brain activity in coma patients can actually be a scary thing for their families

It’s often argued that technological innovation in medicine is key to improving healthcare, and there is no doubt that brain-scan technology such as fMRI is at the forefront of our understanding of the…

Reading the brain. NIMH

It’s often argued that technological innovation in medicine is key to improving healthcare, and there is no doubt that brain-scan technology such as fMRI is at the forefront of our understanding of the brain. While this kind of scan is providing answers to many difficult questions about how we think, communicate and respond to stimuli, not everyone is as excited about its introduction into healthcare.

For some patients with severe brain-injury and in long-term vegetative or minimally conscious and their families it actually raises more questions and concerns than answers. And contrary to what you might think, when it comes to some families’ views, the answers that this technology claims to provide may not actually be what they want to hear.

Take some recent research, which used fMRI (functional magnetic resonance imaging) to scan the brains of severely brain-injured patients in an attempt to detect levels of awareness and possibly communicate with them. In some media it was reported as a “breakthrough” and a “remarkable” technology that was “bringing hope” for patients and their families.

But ask the families and their views can be markedly different. This is what we did for a piece of research on the apparent gap between media reporting and family reaction.

fMRI: at the forefront

fMRI technology works by scanning the brains of patients who have been diagnosed as vegetative (unaware) or minimally conscious (fluctuating awareness) to see if certain parts of their brain “light up” while they are asked to imagine various tasks.

This “mental imagery” has also been used to “communicate” with one patient via yes and no questions.

This is a step change from current methods used to diagnose these long-term coma-type states, which have until now mainly relied on one of a number of standardised tests carried out at the patient’s bedside. But this type of testing can be inaccurate and often leads to some patients being labelled “unaware” even though they have some level of awareness.

The idea, and in theory a good one, is that fMRI technology could in the future help with the diagnosis of, and possibly the communication with, some severely brain-injured patients. As such, there is a real eagerness to get this fMRI research into clinics as quickly as possible so that it can be accessible to all severely brain–injured patients.

But translation of any technology into a clinical setting is not without its challenges. And from the interviews we conducted with some relatives of severely brain-injured patients it’s clear that while some are hopeful about fMRI, it’s by no means universal.

Another reality for some

One woman, who I shall call Rachel, talked about this technology potentially “stealing the hope” she had that her relative would recover. Hope for Rachel was a coping mechanism for her situation, and her fear of the possibility of unfavourable fMRI results could take that hope away because while hope is out there “it’s not dashed, it’s still a hope, but once you do it [fMRI] … you [could] feel a bit sunken”.

Rachel isn’t the only person who has reservations. Another interviewee, who I have called Laura, was also not hopeful, but for a different reason. Laura dreaded the possibility that after nine years of being considered vegetative, her daughter might have some level of awareness:

For us it would just make us feel so much worse. My heart would bleed for Lavena to think there’s been something going on there all this time and she’s still trapped where she is … and when I hear something like that [fMRI] I think …my poor girl, you’ve been suffering, I would see it as suffering, like the mental torture … And a feeling of uncertainty and almost dread in a way … it’s not something that I could personally put Lavena through.

Even contemplating the technology for her daughter felt like an emotion burden:

We’d feel so guilty that we haven’t tried harder to get through to her, but yet we know that everything has been done, you know …

Everyday care can matter more

Even if for a moment we put families’ fears and concerns to one side the situation still looks messy - science and future patients may benefit but it may not change a particular patient’s situation now. fMRI may be able to (for a very few number of patients) aid communication, but as Laura put it:

Scientists can say ‘yes there’s something going on there but I’m sorry Mrs [X] we can’t do anything to help your daughter get out of it’.

A woman who I called Alison was also concerned. She thought that even if your relative could communicate, how would that help if there was no fMRI scanner around? What Alison was getting at was that you can’t be hooked up to an fMRI all the time, although expense and access to machines would also be an issue.

If you knew that your loved one could communicate … that would be great, [but] how do you accommodate that … you can’t have someone in an MRI scanner for the rest of their life … [what] if there is something there but there’s not a damn thing that we can do to get to her to reach her.

There is no doubt that there are numerous benefits from technological advances, but in this case it’s important that families’ views are taken into account when translating research into a reality. Many families alluded to better everyday care and support for patients as they live lives bound by their condition as more important than grand technological development. And while new technological advances are exciting science, and many media want to find the human story, not everyone is so excited that it will change their life and that of their loved one.