We must do better for patients

For five weeks, my family sat vigil beside my father at St. Boniface Hospital as he died from advanced Parkinson’s disease.

Like many families facing serious illness, we arrived frightened but hopeful that the health-care system would stabilize my father’s condition and help us bring him home.

While many health-care workers showed extraordinary kindness — nurses, aides, cleaning staff, and palliative care staff working under immense pressure — our experience also exposed something more troubling: a system unable to support dying with dignity.

This is not about one bad nurse or one hospital stay. It is about fragmentation. Families become de facto care co-ordinators while exhausted staff work inside systems no longer designed around illness and death.

My father, Alberto Aiello, lived with Parkinson’s disease for more than 15 years. During his final hospitalization, we repeatedly bridged communication gaps between teams and navigated inconsistent information about treatment options. When he could no longer swallow pills, we asked about liquid levodopa. One staff member said she would follow up. We never heard back. Others later said no such option existed.

Whether it was possible mattered less than the fact that no one seemed to have a complete picture of his care.

That fragmentation extended beyond medical treatment.

When my father was transitioned to palliative care, we were told a palliative bed would likely become available within a couple of days. When that did not materialize, we requested a private room.

Over the following days, each option seemed to shift — offered, reconsidered, then ultimately deemed unavailable for reasons that changed depending on who we spoke with.

In the end, despite repeated requests and changing assurances, my father remained in a shared room during his final weeks with patients whose needs were entirely incompatible with a peaceful dying environment.

But how does a system place such different patients together at the end of life?

Throughout his stay, we also contacted patient relations multiple times. Those conversations were professional and empathetic, but nothing changed.

We faced the same issues again and again. Retelling painful experiences and advocating through a fragmented system became its own form of trauma.

The feedback loop felt broken.

What stayed with me is not anger toward health-care workers, but the strain of watching compassionate people operate inside systems not built for humane care.

As our family became more vocal advocates for my father’s care, the tension became palpable. Conversations felt rushed or fragmented. Doctors and charge nurses often avoided eye contact. That is difficult for everyone involved — families, staff and patients alike.

The defining moment came on the final evening of his life.

On April 15, before leaving, I asked again that we be contacted if his condition changed. Our communication plan had been respected throughout his stay: my brother and I were the primary contacts due to language considerations and my mother’s fragility.

That continuity broke down that night.

A new nurse unfamiliar with our family and context was assigned. According to the nurse’s account, my father’s breathing changed significantly around 6 p.m. and worsened over several hours.

No one called us.

At 8:30 p.m., my mother received a call saying he had already passed away.

After five weeks at his bedside, the opportunity to be with him at the moment of his death was taken from us.

That is something our family will carry forever.

We were likely among the fortunate families. We had time, support and the ability to advocate constantly. Many families do not.

Which raises the question: if this is what end-of-life care looks like now, what happens as our population ages?

Manitoba’s recent budget acknowledges the strain on health care and includes significant investment to expand capacity. But rebuilding health care cannot mean only more staff or space. It must also rebuild communication, continuity, caregiver support and patient-centred care.

Our system is under immense strain. Staffing shortages and rising demand for palliative care are real. But they cannot justify fragmented communication, incompatible care environments, or systems that leave families carrying the burden alone.

We need to ask harder questions about how we do better — how we build systems that see the whole patient, support staff and protect dignity at the end of life.

Because unless we do, experiences like ours will only become more common.

Sina Aiello writes from Winnipeg.