Why The Assisted Dying Bill Needs To Consider Longer-Term Illnesses

Imagine being bedbound, in extreme pain, unable to walk, speak, eat, sleep, see, hear, or perform any basic life functions, with no knowledge of who you or others are. Your quality of life is so diminished that you feel more like a passive observer of existence than a person. This reality is one that many individuals face – not just those with terminal illnesses expected to end their lives within six months but also those with chronic, degenerative conditions that may persist indefinitely. For such individuals, assisted dying can represent not a failure of care but a final act of agency over their own lives.

Read: Better Off Dead?: Liz Carr Debates Why We Shouldn’t Legalise Assisted Dying  

Expanding the scope beyond six months

The upcoming Assisted Dying Bill in the UK, set to be debated in Parliament, proposes legalising assisted dying for adults with terminal illnesses who are expected to die within six months. While this is a significant step forward, it is a narrow definition that excludes many who suffer just as deeply—individuals with long-term, incurable conditions that make their lives unbearable.

Chronic illnesses such as advanced multiple sclerosis, motor neurone disease, or severe dementia can leave individuals in prolonged states of suffering. For many, the possibility of improvement is not realistic.

For instance, in Canada and the Netherlands, where assisted dying laws include people with intolerable conditions, safeguards are in place to ensure decisions are deliberate and not impulsive. Expanding the UK bill to include long-term illnesses would offer the same compassion to those suffering over decades as it does to those facing the last few months of life.

Why assisted dying should include non-terminal illnesses

For people with non-terminal disabilities or conditions, the issue is not about dying soon but enduring an unbearable quality of life. Many are entirely dependent on care that is often inadequate.

For example, a lack of properly trained carers or reliable social care systems can leave individuals feeling neglected, traumatised, and vulnerable. This is not hypothetical—it is a daily reality for many disabled people reliant on family support into adulthood or facing abuse and neglect in underfunded care systems.

A person’s ability to live a fulfilling life should not hinge solely on the adequacy of public or private support systems. When these systems fail, as they often do, assisted dying becomes not just about alleviating physical pain but also about relieving profound mental and emotional suffering.

Many people with long-term conditions face isolation. They cannot study, work, travel, or socialise, spending most of their time indoors interacting only with healthcare professionals. Advances in technology may help some connect with others, but for many, being housebound or bedbound remains isolating. Over time, even virtual tasks can become impossible due to pain, limited mobility, or cognitive impairments.

Living without a safety net

For some, the prospect of outliving their support network, such as parents, is a constant source of fear. This fear is not irrational—many have seen how poor-quality care leaves individuals physically and mentally at risk. Without reliable support systems, some are left in such dire situations they would rather die than face years or decades of neglect and suffering.

Countries like Belgium and Canada have recognised this by expanding their assisted dying laws to include individuals with chronic and incurable illnesses. Safeguards—such as requiring multiple medical evaluations, waiting periods, and mental competence assessments—ensure that assisted dying is a deliberate and compassionate response to sustained suffering, not a rushed decision.

The need for better care systems and choices
The ideal solution is not simply to offer assisted dying but to improve care systems, ensuring individuals do not feel that death is their only option.

Opponents of assisted dying often advocate for better palliative care, aiming to improve patients’ quality of life. However, even with excellent care, many people with chronic illnesses remain bedbound, unable to perform daily activities, and dependent on others. Medication may temporarily alleviate symptoms, but for most, quality of life remains severely restricted.

Witnesses to palliative care often recount that, despite the best efforts of carers and nurses, their loved ones spent their final days hallucinating, unconscious, or unable to communicate – leaving these moments as lasting memories before death.

While better care and social support would make life worth living for many disabled people, the current state of care services often fails to provide dignity and respect, trapping people in cycles of trauma and despair.

Furthermore, allowing people to end their lives with dignity could free resources in the health and social care sectors for those who can be treated to achieve a good quality of life. While authorities should continue researching treatments for incurable conditions, people should not have to endure excruciating pain or a “vegetative” existence until solutions emerge.

Public sentiment and ethical considerations in assisted dying

Recent surveys indicate growing public support for assisted dying in the UK. As of November 2024, about 70% of people in England back changes to permit assisted dying, with only 14% opposing it.
The strongest support is for terminal illnesses with less than six months to live, though support drops slightly for conditions extending up to a year. When it comes to non-terminal conditions causing intolerable suffering, 56% of people favour assisted dying, while 35% oppose it.

Concerns about potential misuse highlight the importance of effective safeguards. Advocates argue that legalising assisted dying could provide relief for individuals facing unbearable suffering, while opponents raise ethical, religious, and moral objections.

Experiences of terminally ill individuals, such as Dame Esther Rantzen, have informed the debate, advocating for legislative changes to provide more compassionate end-of-life options.

A broader perspective on assisted dying

The Assisted Dying Bill is a significant step forward, but limiting it to those expected to die within six months excludes countless individuals whose suffering is no less real. Expanding the scope to include those with long-term, incurable conditions could restore agency and dignity to those abandoned by failing systems.

While we must fight for better care, we must also recognise that for some, the most compassionate choice is allowing them to decide when and how their suffering ends.

As this debate unfolds, it is crucial to listen to the voices of those directly affected. Many express the same sentiment: without the promise of safety, dignity, and support, assisted dying must be an available choice for all who endure intolerable lives.

Please note:  This is the opinion of an anonymous individual and not the words of Crip Life™.

What are your thoughts on the Assisted Dying Bill? Let us know in the comments books, on social media or contact us to share your personal story.