The Quiet Peril: Assisted Dying and People Living with Dementia

As our society grapples with profound ethical questions about life and death, the debate over assisted dying has taken centre stage with the introduction of a private members bill in Parliament. For many, it represents autonomy, compassion, and relief from suffering. However, for people living with dementia, the introduction of assisted dying laws carries a unique and troubling set of risks that are often overlooked.

In this blog, I explore the nuanced dangers these laws may pose to one of the most vulnerable populations in our society. While I am aware that the Bill in its current form has few implications for the dementia community, I believe that it's never too early to examine what may lie ahead if the scope of assisted dying expanded to include cognitive decline (as some have already expressed the wish for).

The Illusion of Autonomy

One of the strongest arguments for assisted dying is the preservation of personal autonomy. The idea is that individuals should have control over their own lives, including the right to end suffering on THEIR terms. However, dementia progressively erodes the very autonomy this argument is built upon.

As dementia advances, individuals may lose the ability to make informed decisions, communicate clearly, or even comprehend their circumstances. This raises an unsettling question: Who decides when someone with dementia is suffering "too much"? Without clear and consistent guidelines, there is a real danger that decisions could be influenced by external pressures, misinterpretation of past wishes, or the biases of those around them.

A Slippery Slope Toward Coercion

People living with dementia often face stigma, marginalization, and a sense of being a "burden" on their families and society. This societal narrative can be profoundly harmful. For those with dementia, the suggestion of assisted dying could be perceived not as a choice but as an expectation.

In environments where healthcare resources are stretched and caregivers are overwhelmed, subtle (or even overt) pressures may arise to encourage assisted dying as a "practical" solution. What starts as a compassionate option could morph into a societal norm, where people feel obligated to consider it for fear of imposing on others.

The Problem of Consent

Here in the UK, assisted dying would require the individual to be mentally competent (to have "capacity" at the time of their request. But dementia complicates this requirement. By the time the suffering becomes unbearable, people with dementia may no longer have the capacity to give informed consent.

Some advocates propose advance directives—documents outlining end-of-life wishes made while still mentally competent. While this may seem like a solution, it raises serious ethical and practical dilemmas. Can a directive made years earlier truly capture the nuanced emotions and experiences of the person living with dementia in the present moment? And how do we navigate cases where their behaviour suggests a will to live despite what their directive states?

Erosion of Trust in Care

The introduction of assisted dying for people with dementia could fundamentally alter the relationship between patients and caregivers. Trust is the cornerstone of dementia care. Patients rely on their caregivers to act in their best interests, often in situations where they cannot advocate for themselves.

If caregivers or medical professionals are seen as potential arbiters of life and death, this trust could be irrevocably damaged. Families and patients might fear that decisions about their care are guided by cost, convenience, or personal bias rather than compassion and respect for their dignity.

Alternatives to Alleviate Suffering

Instead of focusing on assisted dying, we must prioritize improving the quality of life for people with dementia. Investments in palliative care, support for caregivers, and innovative therapies can provide relief without undermining the sanctity of life. Compassionate care should mean addressing suffering in ways that preserve dignity, not extinguish life.

A Call for Vigilance and Compassion

As our society navigates the complex terrain of assisted dying, we must remain vigilant about its potential dangers, particularly for those with dementia. The ethical implications are profound, and the consequences of getting it wrong are irreversible.

People living with dementia deserve compassion, respect, and care—not a quiet slide toward the normalization of assisted death. Though often silenced by the condition, our voices must be amplified in these critical conversations.

In our quest to offer choice and autonomy, let us not create a system that inadvertently devalues the lives of the vulnerable. Let us commit to building a society that sees their dignity not as a burden to be lifted, but as a responsibility to be cherished.

By exploring these issues, I invite readers to engage thoughtfully and compassionately with one of the most pressing ethical challenges of our time.

Together, we can ensure that the path we choose honours life, even in its most fragile and complex forms.