Living with terminal illness: my family’s perspective on assisted dying
By Izzy Bainbridge
Content warning: discussions of terminal illness and death.
Death was a common discussion around the dinner table – not out of morbidity but necessity. It was the reality of living with a terminally ill older sibling. The day when my brother asked my parents about assisted dying, to be honest, I wasn’t surprised; it is a thought that many in his position contemplate.
The Terminally Ill Adults (End of Life) Bill has received intense media coverage and has catalysed public debate with its progression through Parliament. Even though the topic has recently dominated headlines, the voices of those who have endured the painful realities of terminal illness, like my own family, remain sidelined.
Sebastian was a medical marvel – born with a congenital heart defect colloquially referred to as “half a heart”, a rare liver disease called biliary atresia, and internal organs positioned atypically, he became a familiar face in Evelina Children’s Hospital. His case has been cited in medical journals, having outlived doctor’s predictions by over a decade. Despite surviving a traumatic birth involving three open heart surgeries, by the time I was born, from a distance, strangers would assume he was a normal child. A devoted Arsenal supporter, he had ambitious aspirations to be the next Gordon Banks, was a talented chess player, and had an infectious giggle. Yet despite all efforts, many childhood dreams went unfulfilled, cruelly taken by an unending list of healthcare problems that over time, drained his physical and even cognitive functions. In his final years he was a wheelchair user and suffered from moments of delirium, where at times, he couldn’t even recall who I was. Seb passed away just twenty days after his 22nd birthday, marking the end of a hard-fought battle with multi-organ failure.
Despite enduring years of deteriorating health, Sebastian maintained an indomitable spirit, always believing he could “get better”
Despite enduring years of deteriorating health, Sebastian maintained an indomitable spirit, always believing he could “get better”, as my Mum, Marcela, recalls. Seb’s determination to live was a testament to her work as both a mother and a carer which made his life worth living. However, Marcela admits there were moments when she silently questioned whether prolonging his suffering was the right choice. Though over three years have passed since his death, his absence remains deeply felt, which she says is in part due to the “brutality” of his death. “When you’re faced with unending pain, it’s hard not to consider the alternatives” – a sentiment that resonates deeply with many caregivers.
From the day my brother was born, my Mum left a job she loved to become a full-time carer. As his condition worsened, my Dad unofficially became a part-time carer too, working from home to assist my Mum. Undeniably, this is a privilege not possible for many families. Towards the end, even their combined care was insufficient, and we had a Marie Curie nurse helping with overnight shifts. The nurse, Joseph, himself said it was unlike anything else he had seen before. During this period, there were many times when I’d come home from school to find everyone asleep in the living room. The image captures the reality of two parents at their physical and emotional capacity, determined to honour Seb’s dying wish to be able to pass at home.
He emphasised the importance of the stringent safeguards outlined in the Bill, to ensure that patients demonstrate the mental capacity to make decisions regarding their health
The role of palliative care in this debate is equally fraught. Marcela describes her mixed feelings about its introduction during Seb’s final days. My mother describes accepting palliative care as “an admission of defeat”. In the last twenty-four hours of his life, Seb was transferred from home to St Christopher’s Hospice. In my opinion, it offered a peaceful sanctuary in comparison to the sterility of a hospital environment. Marcela states the need to address structural issues within NHS palliative services, mentioning her delayed access to grief counselling, which left her struggling with post-traumatic stress – just one example of the wider pressures facing an overstretched system. My Mum also sympathises with the concerns of medical professionals, who are grappling with the ethical dilemmas posed by the proposed legislation. There are concerns surrounding the bill’s ambiguous definition of a “coordinating doctor,” cautioning it could force practitioners into roles that conflict with their vocational ethos.
Sebastian’s transition from paediatric to adult care introduced new challenges. Upon turning eighteen, legal protocol dictates that decisions once made collaboratively with his parents are now shifted solely to Sebastian. “The mood changes,” my Dad, Paul, reflects, questioning whether this approach adequately considers the unique needs of patients with special needs. He emphasised the importance of the stringent safeguards outlined in the Bill, to ensure that patients demonstrate the mental capacity to make decisions regarding their health. My brother had mild learning difficulties, and whilst he was an intelligent and witty individual, he struggled to articulate or fully comprehend more complex topics. My Dad notes his experience where he felt as though Sebastian’s mental state was overlooked in decision-making. To compensate for this, my parents made a concerted effort to be as present and involved as possible. Over the years, whenever Seb was admitted to the hospital, my parents took turns – my Dad cycling in before the first rounds at the ward, and my Mum staying as late as possible.
Societal discourse should not focus on assisted dying, but on creating conditions where its necessity is rare
Paul expressed further concerns about the broader societal impacts of normalising assisted dying. “If it becomes commonplace, the terminally ill might feel pressure to avoid being an economic or emotional burden”, which would perhaps most impact elderly populations. However, an important consideration is that there is considerable difference in emotional maturity between older and younger adults. Elderly individuals have a lifetime to reflect and arguably are sacrificing less. In the case of my brother, I believe it was a fleeting thought or even mere curiosity in a time of great uncertainty and fear, highlighting the need to ensure that assisted dying is a decision made with long-term clarity rather than one of impulse. Those with learning difficulties also require unique protections, as without them, families may find themselves in a position of disputing their mental capacity to make such an irreversible decision.
Ultimately, my family believes that freedom of choice is essential to compassionate healthcare. However, having witnessed such suffering first-hand, both mental and physical, I believe that, when supported by rigorous safeguarding measures, the option of assisted dying can offer a merciful and empowering sense of agency at the end of life. I cannot begin to describe the level of pain which my brother endured and the resilience he demonstrated. I question whether if the roles were reversed, I would have had the same defiant will to live.
However, my parents both agree that it would be a tragic irony if resources for assisted dying were at the expense of palliative care. In the context of terminal illness, we believe resources would be more efficiently allocated towards improving quality of life in a person’s final days – relieving pain, providing comfort, and preserving one’s dignity. From our perspective, societal discourse should not focus on assisted dying, but on creating conditions where its necessity is rare.
Image: Wutthichai Charoenburi via Pexels
