When the Voice Goes Quiet: A Therapist’s Reflections on MND, Assisted Dying and the Complexity of Choice

What happens to our understanding of choice when the person making the choice can no longer use their voice?

Assisted dying is one of those subjects that seems to invite a lot of certainty.

People can have deep beliefs about dignity, autonomy, suffering, compassion and the right to choose. Others hold equally deeply held concerns about vulnerability, coercion, disability, the value of life and the possibility that people may feel like a burden when they should instead feel supported.

As a therapist, I totally understand why people want to locate themselves firmly on one side or the other.

But my own relationship with this subject is less clear-cut.

And that is because I first encountered MND not through books or public experience, but through my mum.

I was fourteen when she became ill and MND was part of our family life for around five years.

I was a child experiencing something that I could not possibly have had the language to understand fully at the time. I knew my mum was changing. I knew that things she had once been able to do were becoming harder. I could see that our family life was gradually being reorganised around an illness none of us had chosen.

Looking back now, with the perspective of adulthood and with my experience as a therapist, I understand some of those years differently.

One of the things that stays with me most is the importance of communication.

Because with MND, losing the ability to speak is not only losing a physical function.

A voice is how we express pain.

It is how we say I love you ... or how we become frustrated, frightened, funny, sarcastic, angry or reassuring.

It is how we answer a question and how we say yes. And it is also how we say no.

MND can affect speech in different ways and for some people communication eventually becomes extremely difficult or impossible through speech. There are now many forms of communication support, including communication aids and voice or message banking. But these do not necessarily make communication simple. They can change everything we understand about the emotional experience of having a conversation.

That matters when we talk about assisted dying.

Because at the heart of much of the debate is the concept of choice.

We often imagine choice as something straightforward.

A person says what they want and we listen.

They make a decision and we respect it.

But what happens when speaking becomes exhausting?

What happens when communicating takes several minutes rather than several seconds?

What happens when a person has to use a computer, eye-gaze technology, a communication board or another device to express something deeply personal?

What happens when the question being asked is not "What would you like for lunch?" but something as profound as "Do you want to continue living?"

The complexity becomes difficult to ignore.

A voice is not the same thing as a capacity to choose

It is important not to confuse speech with thought.

Someone who cannot speak may still have a perfectly clear understanding of what they want, what is happening to them and what choices are available.

Losing a voice does not mean losing who they are, their values or principles.

It does not mean losing intelligence.

It does not automatically mean losing the ability to make decisions.

This distinction feels really important when discussing MND.

Communication can become physically difficult while the person remains mentally engaged, emotionally connected and fully themselves.

So perhaps the question is not simply:

Can this person speak?

Perhaps the more important question is:

Can we still hear them?

And those are very different questions.

What does it mean to be heard?

I'm a therapist; I think a great deal about the space between what someone says and what another person hears.

We all bring assumptions into conversations. We will interpret tone. We will notice facial expressions. We anticipate what somebody is going to say.

Most of the time, this happens without us thinking about it.

But when communication becomes impaired, there is much more opportunity for misunderstanding.

A pause may be interpreted as uncertainty.

Difficulty getting words out may be interpreted as hesitation.

Needing more time may be interpreted as confusion.

Silence may be interpreted as agreement.

And perhaps most concerning of all, someone else may begin speaking for the person because it feels quicker or kinder. Sometimes that may be necessary. Sometimes it may be helpful.

But I think there is a delicate line between supporting someone's communication and unintentionally replacing it.

Current work around communication in MND increasingly recognises that communication is something created between people. The MND Association's recent Better Conversations resource, developed with UCL, specifically explores how people living with MND and those around them can navigate changes in communication, including situations where speech is no longer being used.

That feels significant.

Because maybe communication is not just about whether somebody has a voice.

It is also about whether the people around them are prepared to slow down enough to listen.

The word "burden" troubles me

One of the hardest aspects of this conversation, for me, is the idea of being a burden.

People living with progressive neurological illnesses can become increasingly dependent on others.

Family members may provide intimate care. Partners may become carers.

Children may witness changes in a parent. Independence can become increasingly difficult. And it is entirely understandable that somebody might experience this loss profoundly.

But there is a difference between being dependent and being a burden.

Those words are not interchangeable.

As a therapist, I would be wary of assuming that a person's wish to die necessarily tells us what they objectively think about the value of their life.

It may tell us something about their suffering.

It may tell us something about fear.

It may tell us something about loss of control.

It may tell us something about identity.

It may tell us something about how they imagine the future.

It may also be a considered and enduring expression of autonomy.

And perhaps it could be several of these things at once.

That is where I find the conversation difficult.

Because I don't think compassion requires us to assume that every wish for death means the same thing.

Nor do I think compassion requires us to dismiss such a wish.

It may require us to become curious about it.

And then there is the family

When someone is seriously ill, their experience is not the only experience in the room.

There is the person who is ill, there is the partner, the children, parents, siblings and friends.

There are professionals.

Each person will be carrying a different version of what is happening in front of them.

For a family member, that love can become really complicated.

You may want someone to remain with you for as long as possible.

You may also want them not to suffer.

You may fear losing them.

You may fear prolonging something they no longer want.

You may feel guilty about either of those wishes.

And you may not even know which feeling is yours and which belongs to the person you love.

I remember being fourteen.

I could not have understood these questions in the language I would use today.

But I do understand now that serious illness changes the emotional dynamics of an entire family.

The person who is ill is living inside the illness. The people who love them are living alongside it. Those experiences overlap, but they are not the same.

Perhaps this is why I struggle with simple answers

I don't know whether assisted dying is ultimately right or wrong.

And I don't think my experience of my mother gives me the authority to answer that question for anyone else.

It gives me something different. It gives me perspective that helps me see the complexity.

It makes me think about what happens when the body changes faster than the world around the person can adapt.

It makes me think about how frightening it might be to imagine a future in which your voice disappears.

It makes me think about how easily autonomy can become confused with independence.

It makes me think about how important it is to distinguish a person's inability to speak from an inability to communicate.

And it makes me think about how much responsibility sits with the people around someone who is vulnerable.

Not responsibility for deciding what that person should want.

But responsibility for creating the conditions in which they can express what they actually do want.

There may be no uncomplicated position

The assisted-dying debate is often presented as a conflict between autonomy and protection.

But perhaps it is more complicated than that.

There is autonomy.

There is suffering.

There is dignity.

There is disability.

There is fear.

There is love.

There is grief.

There is the possibility of coercion.

There is the possibility of unbearable suffering.

There is the fear of becoming dependent.

There is the possibility of feeling deeply connected to life despite profound physical deterioration.

There is also the possibility that two people with the same diagnosis could have completely different experiences of what makes life worth living.

MND does not produce one universal experience.

Neither does disability. Neither does dying and neither does being a family member watching someone you love become increasingly physically dependent.

Perhaps this is why I feel uncomfortable when discussions about assisted dying become too certain.

Certainty can sometimes leave very little room for the person sitting in front of us.

Listening before deciding

The question I keep returning to is not simply whether someone should have the right to choose.

It is something more fundamental:

What does it take to make sure that a person's choice is genuinely heard?

For someone with MND, that might mean having enough time. It could look like the right communication technology or access to speech therapy. It might mean learning to understand that a computerised voice is still the voice of the person we know and love.

Sometimes it means asking a question and allowing silence or it might mean checking rather than assuming.

It can be having difficult conversations early, before communication becomes much harder.

The MND Association highlights the importance of planning for communication changes and notes that communication can deteriorate rapidly, making early support and planning particularly important.

Perhaps, ultimately, that is what my experience has left me with....not an answer.

A question.

When someone can no longer use their voice, are we still listening carefully enough to hear the person?

And if we are going to have conversations about something as profound as assisted dying, perhaps that needs to come before everything else, rather than deciding what someone should want or what we would do in their position,

But making space for them to tell us who they are, what they fear, what they value, what they hope for and when words become difficult, finding ways to hear them anyway.

Because losing a voice should never mean losing the opportunity to be heard.