WATCH | When medicine isn’t mercy: A daughter’s plea for choice

Mary Busuttil was a strong and independent woman who enjoyed life. She loved her children and did everything for her family.  

But in 2021, after suffering back pain, she was diagnosed with a rare form of leukemia—Acute Myeloid Leukemia (AML). The diagnosis would change her life and that of her children.  

Mary’s white blood cell count dropped drastically. A healthy person has a white blood cell count of around 11,000—Mary’s stood at just four. 

And yet, Mary lived on, grabbing life by the horns, refusing to let the disease dictate the way she lived, according to her daughter, Gertrude Borg Marks. 

Aged 77, Mary could not receive chemotherapy, but was on a medical programme were every three weeks she would receive a blood transfusion to replenish white blood cells. 

“After the treatment she would spend two weeks feeling great, but on the third week she would start to grow weak again,” Gertrude tells me. 

But her mother kept a positive outlook on life, continuing to attend events, coffee mornings and walking around. “This happened in the period when COVID-19 restrictions were being lifted, and despite our concerns on her fragility, she would put on the visor, because she hated the face mask, and would go off on her little adventures,” Gertrude recalls. 

Gertrude pictured with her mum Mary

At some point Mary’s condition worsened, and the infections got worse and worse. After three years, Mary’s health took a drastic downturn.  

Comparing it to a bucket with a hole, Gertrude says in the first few years the white blood cells in her mother’s body were being slowly replenished through treatment. “But the hole kept getting bigger and bigger,” she adds. 

At some point the pain got so bad she could not even move a finger. “All she could move were her eyelids. Because she was not moving at all, the rest of her body then started to ache due to stiffness, and because she had no option but to move, the pain was so intense in her back she would let out a loud scream,” Gertrude says. 

Mary spent the last six months of her life moving from one hospital ward to another, aching and suffering. 

After years and months of suffering, on 2 July 2024, Mary let out her final breath. 

‘She did not have to suffer that long’ 

Living the final days with Mary were her children and husband. While she suffered physical pain, her children had to endure psychological suffering as they watched their once powerful mother, endure a slow and painful death. Today, Mother’s Day, will be the first without Mary around. 

“After she passed away, I tried to tell myself that it is normal for mothers to die. I’m not the only one to have it happen to me. My pain stems not from her having to suffer, but from her having to suffer that long,” Gertrude says, as tears fill her eyes. “She suffered for so long.” 

Gertrude has been a long-time supporter of assisted dying, giving patients the choice to end their suffering. She tells me that she had broached the subject with her mother in her final days. 

“At the end she didn’t tell us she wanted to die, but told us she was tired and we [her children] kept her going. She was a religious person, but knew where I stood on the subject, and she respected my decision,” Gertrude says. “I had told her: ‘if only if we had euthanasia’.” 

Mary had firmly turned down the idea, but this gave Gertrude further assurance on why such laws need to be enacted.  

“I realised more than ever this is a personal choice. It is not an imposition but a choice made by the individual,” she says. “It also showed me that I do not want my children to see me in the same state I saw my mum.” 

Gertrude agrees with the proposal put forward by the government for the introduction of voluntary assisted dying for terminally ill patients. The consultation document makes it clear euthanasia will not be available to individuals with disabilities, mental health conditions, age-related illnesses such as dementia, or those experiencing social isolation in care homes. Patients must be over 18, have been resident in Malta for at least 12 months, and must personally request assisted dying. Doctors will be prohibited from suggesting the option to patients. 

A patient requesting assisted dying must undergo assessment by three medical professionals and if granted the go ahead, the case is referred to an independent medico-legal board for final approval.  

No glory in suffering  

Opponents of the law, including Archbishop Charles Scicluna, have called for improvement in palliative care, instead of introducing voluntary euthanasia. Scicluna also called on doctors not to be “dispensers of death”. 

Faced with these statements, Gertrude insists it is not enough to improve palliative care. “My mother was in palliative care, but the pain and suffering continued to grow,” she says. 

I ask her if she sees any glory in suffering. Gertrude dismisses the notion. 

“Those who feel there is such glory, have the right to believe so, and that glory will not be taken away by introducing euthanasia. Let us remember there is no hope in these situations. For me, suffering without hope, has no glory,” she says.  

On concerns the law could lead to a slippery slope into the unknown, Gertrude refuses the idea. 

“I actually think government’s proposals are too rigid, and still unjust and discriminatory,” she tells me. “I believe the checks and balances to prevent abuse should remain, but where there is suffering or lack of mobility which will impact quality of life; I believe the law should be more flexible.” 

Gertrude understands that some people, for whatever reason, may want to live until their natural end irrespective of how debilitating their disease is, or what pain they are passing through. But what she asks for is the right to make a different choice.