Quality of Life First: Grant Monks’ Journey Through Palliative Care and Back Home

When Grant Monks went into palliative care as a teenager, he wasn’t expected to live. Now in his early 30s, that period of his life was the cornerstone of an outlook on what it means to be alive.

Just like the kidney disease that brought him there, palliative care is simply a part of Grant Monks’ life story.

Since the age of six, Grant has been in a battle with kidney disease. In the beginning, his condition was managed with peritoneal dialysis—a type of dialysis that uses the lining of the abdominal cavity (the peritoneum) as a natural filter to remove waste products and excess fluids from the blood—which allowed him to attend school during the day, and undergo treatment while he slept.

After a decade successfully treating his kidney disease this way, Grant’s health took a turn. The lining of his peritoneum, essential for the dialysis process, began to deteriorate, resulting in severe complications that led to encapsulating peritonitis.

“I didn’t realise how sick I was at the time,” recalls Grant, “but looking back and seeing photos from then, I was pretty sick.”

Grant’s condition escalated, resulting in frequent vomiting and significant weight loss. Eventually, he underwent surgery to remove the obstructions caused by the peritonitis; a procedure that was fraught with complications and infection.

At a time when most teenage boys are learning to drive, Grant was was having to contemplate the end of his life.

“At the start of my palliative care treatment, the goal was to manage my quality of life,” says Grant. “They didn’t think I was going to survive.”

For many, including Grant’s teenage self, death is what we associate with palliative care. “That was certainly my understanding of it,” says Grant. In reality, palliative care is as much about life as it is about death.

By design, palliative care is there to improve the quality of life for patients with serious illnesses, managing symptoms and providing support. It’s often part of end-of-life care, but it can also be provided alongside curative treatments, and can help patients live comfortably for an extended period.

Throughout his stay in palliative care, Grant says he was provided with extensive support to not only manage his physical symptoms, but his emotional and social needs as well.

“One of the things I really wanted to do was continue my schooling,” says Grant. “The palliative care team helped set up a laptop and arranged for me to Skype into my classes,” he says.

This helped Grant remain socially connected, too. “My friends would Skype me from parties, and the palliative care team organised visits and created spaces for us to hang out,” he recalls. For Grant, this social support was a critical component to maintaining good mental health during an isolating time in hospital.

In fact, Grant says his team placed a strong emphasis on his mental wellbeing at every stage of his palliative care journey.

When doctors considered transferring him to the intensive care unit, a prospect that terrified Grant, his mental wellbeing weighed heavily in the decision-making process. “I thought, if I go to the ICU, that’s where I’ll die,” Grant recalls. The palliative care team advocated for him to stay on the renal ward, a space of familiarity where he felt comfortable and had built relationships.

This kind of support, Grant says, was instrumental in his recovery and eventual departure from palliative care. Grant emphasises, “It’s so important to treat the patient, not just the disease.”

As the months passed and Grant’s health improved, day trips peppered his weeks in hospital.  He’d spend the day at the movies, or the bowling alley — venture beyond the four walls that had been his home for 9-months.

“When it got to that stage, where I was well enough to leave the hospital for a day, they suggested it might be time to start thinking about being discharged.” Grant no longer needed intensive palliative support.

“I was excited and looking forward to going home, to getting back to normality, but it was also a bit daunting for me,” he says.

More than a decade on from his time in palliative care, Grant’s advice to others who find themselves in a similar situation underscores the holistic approach of palliative care: “Focus on living as best you can. It’s not just about managing physical symptoms but also about maintaining your mental and emotional wellbeing.”