Dignified Death Or Unworthy Life?

What is dignity in death? What is dignity in life? A guest post by Shabnam Rakhiba.

On Monday 16 October 2024, Kim Leadbeater MP (Labour) introduced a private members’ bill in the House of Commons, The Terminally Ill Adults (End of Life) Bill 2024-25. The long title reads: it will “allow adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life” in England and Wales. The bill will be debated on 29 November 2024 for its 2^nd reading in Parliament. The proposal concerns mentally capable adults with a lethal prognosis of six months or less.

Cover page of the Terminally Ill Adults (End of Life) Bill given to the UK parliament (16/10/2024).

I have been living with disabling chronic pain since my mid-twenties: 14 years, that is most of my adult life. I also mentor and coach others with long-term health conditions, and I am the founder of a chronic illness support community. Also, I was there during the months of unfathomable pain my mother endured before her passing because of illness. For both reasons, I feel particularly concerned by this bill.

I’m not here to debate the legal framework for assisted dying as outlined in the bill. For me, we’re simply not ready to have that conversation. This is not the right time, if there could ever be a right time. Proponents argue this is about dignity in death, pointing to the unbearable physical conditions some face at the end of life. Yet, many people with chronic illnesses and disabilities endure similar challenges every day, often without access to the care and support they desperately need. Is this truly about a dignified death, or does it reflect society’s judgment about which lives are worth living?

I invite you to approach the discussion from a different angle: If a dignified life itself remains inaccessible to so many, how might those same biases shape how we view death?

1. A Slippery Slope: From Terminal to Non-Terminal Conditions

The current proposal restricts assisted dying to people with a terminal illness and six months or fewer to live.

Countries that have already legalized assisted dying¹ show that it is not easy to keep the law confined to terminally ill patients. For example, in Canada, assisted dying laws have gradually expanded to include individuals who are not terminal but are enduring long-term suffering due to other health conditions. This shift from terminal to non-terminal conditions happened within 5 years in Canada.²

Assisted dying has been legal in Oregon (USA) since 1997. And it is seemingly still limited to those with a terminal illness. However, there are ongoing questions about what qualifies as “beyond treatment” and terminal³ . For instance, in 2021, Anorexia Nervosa was among the diagnoses reported under Oregon's Death with Dignity Act. This is despite the fact that many patients with anorexia show diminished mental capacity, and it is difficult to determine at which point treatment becomes impossible.⁴ Thus, amendments and revisions have been made to make the law more permissive.

Unbearable suffering and physical pain, uncontrolled bodily functions and loss of personal identity are some of the strongest arguments used to support assisted dying. However, these are not unique to those with a terminal prognosis. Many people with chronic health conditions experience similar challenges daily. Therefore, with a rationale for assisted dying based on the prevention of suffering and dependency, is it realistic to expect it to stay strictly limited to the terminally ill?

2. The Impact on Chronically Ill and Disabled People

It’s important to focus on a particularly vulnerable group: people with chronic illnesses and disabilities. According to the Office for National Statistics,⁵ the number of working-age adults in the UK who are economically inactive due to long-term sickness increased from approximately 2.0 million in spring 2019 to about 2.5 million in summer 2022. One factor contributing to this trend is long NHS waiting times.

As someone who supports women with chronic conditions and lives with disabling pain, I see first hand the profound impact of systemic failures on the chronic illness and disabled community. Many come to me in crisis, struggling with suicidal thoughts. Not because they want to die, but because their quality of life has been eroded by inadequate care, workplace disability discrimination, medical gaslighting, and social exclusion. Where is the dignity in that?

In a world where daily life offers few paths to dignified living, legalizing assisted dying could drive some in the chronic illness community to choose death. Not because their suffering is inevitable, but because they are abandoned by the very systems meant to support them and see no other way forward.

3. Marginalized Communities Face Heightened Vulnerabilities

Marginalized communities, including ethnic minorities and women with undiagnosed health conditions, face additional risks under an assisted dying law. Women, particularly those with complex or invisible illnesses, often struggle with medical gaslighting, where their symptoms are minimized or dismissed entirely, leading to inadequate treatment.

When people, already negatively affected by unfavourable social determinants of health, seek care, healthcare itself may exacerbate health inequalities rather than mitigate them. One way in which this occurs is when patients experience disproportionate levels of harm from the healthcare they receive…… Healthcare may therefore be less safe for some patients than others.⁶

In an environment where healthcare disparities already lead to poorer outcomes, legalizing assisted dying could create an insidious form of coercion for individuals from marginalized communities. There cannot be genuine autonomy where systemic healthcare failures persist.

4. Devaluing Disabled Lives

At the heart of this debate lies the troubling question of what makes life worth living?

Advocates of assisted dying often frame the debate around two key ideas: a life worth living is one free from physical suffering, and autonomy is paramount. Once these are lost, the argument goes, a person should have the right to choose death. It sounds straightforward. But what if someone has never known a life free from pain or disability? What if these challenges arrived early and shaped their entire or most of their existence?

Faced with this narrative, how could they not question whether their life is worth living? Should they feel compelled to consider death simply because society struggles to see value in lives marked by dependence and suffering?

While proponents of assisted dying may claim they make no value judgments about disabled lives, their framing does. When the desire to die is framed around losing autonomy and physical decline, it raises a different question altogether: are these choices truly about valuing individual freedom, or are they shaped by a societal discomfort with dependency and suffering?

Assisted dying is not something I would choose for myself. But, I understand the pain behind the voices campaigning for this bill. I’ve watched suffering up close. A few years ago, my mother endured months of unbearable pain as Multiple Myeloma,⁷ a type of bone marrow cancer, ravaged her spine. Watching her fade away was heart breaking. I often think about what could have made those final months better for her: better pain management, more compassionate care, and meaningful support for both of us. Her experience also made me confront my own fears: I can’t help but wonder about my future as a person living with chronic pain. So, I can empathise with those pushing for this bill.

But right now, I believe the focus should be on empowering people to live, not encouraging them to die because society has failed to meet their needs. Until we have a system that provides the necessary care, benefits, and dignity for everyone, legalizing assisted dying risks becoming a path of desperation, not choice.

Two major changes are urgently needed. Firstly, we must improve access to healthcare, pain management, mental health support, and social services for marginalized groups, including faster NHS care, easier benefits, accessible housing, and workplace accommodations. Secondly, we need to rethink what dignity means, to redefine dignity, so that interdependence is valued, with public campaigns and training that affirm all lives have worth, regardless of ability.

Let’s address marginalization first, so that all individuals have equal opportunities to live fulfilling and empowered lives. Let’s talk about living well first, before talking about dying well.

Footnotes

1. Thousands of doctors & nurses issue stark warning, November 2024.

2. Canada: yes to minors, mental illnesses on hold, February 2023.

3. Oregon Death with Dignity Act access: 25 year analysis, BMJ Supportive & Palliative Care, October 2023.

4. Assisted death in eating disorders: a systematic review of cases and clinical rationales, Frontiers in Psychiatry, July 2024.

5. Rising ill-health and economic inactivity because of long-term sickness, UK: 2019 to 2023, July 2023.

6. Action on patient safety can reduce health inequalities, BMJ, March 2022.

7. Multiple Myeloma. July 2024.