I am in a state of shock.
Three years ago I watched my sister take her last breath in her spacious purple bedroom at Perram House, an intimate eight-bed hospice at 4 Wellesley Place. And now the palliative care residence has shut down.
I can’t imagine what Lisa’s passing would have been like without it.
The range of care she received following her out-of-the-blue lung cancer diagnosis was staggering: from Princess Margaret Hospital’s excellent “short-term” unit to the dismal Toronto Rehab in Parkdale. She often called us in the middle of the night from there, weeping. Her roommate was moaning and hallucinating. The facility was woefully understaffed. Patients roamed the halls as shadows of themselves.
We visited palliative units at St. Mike’s, Grace Hospital and Bridgepoint, all dingy and unmistakably institutional. Then, miraculously, a bed became available at Perram House.
The facility, whose board chair, Frank McCrea, won a Queen’s Diamond Jubilee Medal for his hospice vision, was lodged in a renovated yellow brick Victorian house and never felt like a hospital – it had a palpable heart and soul. The small nursing staff was consistent, and the caregivers got to know Lisa in deeper and more meaningful ways than we could have imagined.
In the last three days of her life, Lisa slipped in and out of consciousness. On what turned out to be her last night, I lay awake listening to her loud, raspy breathing. Her night nurse, a soft-spoken older woman, tiptoed in and out for the first few hours, then settled in until the morning nurse came on.
My younger sister, my partner and I were with Lisa when she passed away hours later. We shared this profound experience with a young nurse who later told us she felt privileged to have been there.
Perram House was a haven for Lisa – and for us. Now, citing dwindling donations and a dispute with OPSEU over wages, this refuge from institutional palliative care which was 80 per cent publicly funded, is no more. Health Care Providers Against Poverty has sent a letter of distress to the province, calling the house “truly a blessing” and declaring losing it “unthinkable.”
Who will step forward to save this special place?
Nina Levitt is a visual artist and a professor in the department of visual art and art history at York University.