Prolonged suffering and the right to die | Josef Said

Research by Esprimi shows that 61% of Maltese support having the legal right to end their life immediately when suffering from an incurable condition. While the concept of the right to die may seem outrageous to those who uphold moral righteousness, it is unlikely they would maintain such a stance if faced with even a few hours, let alone days, weeks, months, or even years of unbearable suffering and the crushing feeling of being a burden to their loved ones.

This is my personal experience. My mother had been in a hospital ward for seven days. She experienced a kind of “locked-in syndrome” and was unable to speak. She could only mumble, her frustration turning into desperation, often followed by tears when we couldn’t understand her. Watching her in this state was unbearable – seven days of helplessness and heartbreak. This was after 20 months of steadily worsening health.

On the night of the seventh day, a Friday, as her condition visibly worsened, my brother and I were not allowed to stay with her for the night. We were told we didn’t have the necessary approvals. We left, only to be called at 3am with the hospital informing us that our mother was moved to intensive care. By 10am the consultant, flanked by two doctors, delivered the news – nothing more could be done. The treatment wasn’t working, and they would now “focus on making her comfortable”.

In intensive care, she depended on a mask strapped tightly to her face to breathe. She was claustrophobic, and though sedated, the discomfort was clear. Her expression conveyed what words could not. It was clear to my brothers and I that she was suffering.

By Monday, the toll was visible on all of us. My brothers and I were exhausted, and our relatives were struggling with the experience. One can only imagine what my mother was feeling. In desperation, I asked the nurse if there was anything more, they could do to ease her discomfort. Her response stunned me: “At times, we treat animals better than humans.” She grabbed my arm, her eyes with tears, and urged me to “stay strong”.

On Wednesday, my mother was discharged from intensive care – not because she had improved, but to make room for others who could still be saved. That night, I had the night shift. She moaned in pain and discomfort. She often gently squeezed my hands to give her attention... her facial expressions were crying for help which I couldn’t give. By morning, when my brother came to relieve me, I was emotionally drained. Strong chest pains and a pressing need to cry... but I couldn’t.

On Thursday at 1pm, the medical team gave my mum the first dose of morphine. She slowly drifted into a state of unconsciousness. The medical team assured us she was not suffering and was at peace. My brothers and I believed she was still very aware of what was happening, even if she couldn’t communicate or move. Her eyebrows shifted slightly whenever one of her favourite songs from her youth played from the playlist.

On Friday and Saturday, her body began to swell, making her almost unrecognisable. The senior registrar visited daily without fail. I believe more to support us than to do any actual interventions. On Saturday, I commented on something I can’t even remember, but it brought the senior doctor to tears. Despite having witnessed countless cases like my mother’s, she was deeply affected. She wasn’t the first staff member I saw visibly shaken that week.

On Sunday at 4:30pm, my mother passed away. Her suffering was over, but relatives and medical staff were all left with the pain of watching her endure it.

It is hard to comprehend how dogma and a lack of public discourse on end-of-life choices have left us paralysed in inaction. Denying patients, the right to die when their prognosis is final is a profound cruelty – a cruelty so severe that we would not subject animals to. It is a cruelty that serves no purpose other than to prolong suffering and inflict deep emotional pain on both the patient and their carers.

Allowing terminal patients the right to die does not take away the option for others to endure their journey in their own way. It simply provides a choice. One that can bring dignity and hope where there would otherwise be only despair. And despair is the last emotion any terminal patient or their loved ones should have to endure.