Palliative care: Toronto left with few residential hospice beds
Every time a Perram House patient passed away, a staff member wrote that person s name and date of death on a small white card and placed it near a candle in the front entrance.
It was the 10-bed residential hospice s way of honouring the deceased, allowing their memory to remain in the heritage home s grand foyer, if only for a few more days.
One final card was written last month, but it didn t feature a patient s name. To the disappointment of those desperately needing palliative care in this city, it read: Perram House. April 10, 2013.
The hospice a yellow brick house at 4 Wellesley Place closed suddenly after nearly a decade of providing palliative care to Toronto residents from all walks of life.
Outraged staff accused board chair Frank McCrea of shutting down the union, which had recently organized to demand a wage increase. McCrea, meanwhile, blamed dwindling donations that had forced the charity to operate at a loss for months.
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Whatever the reason, the closure of Perram House leaves Toronto with only two residential hospices.
To me, it s really shocking, said Bill O Neill, executive director of Kensington Hospice, where the phone has been ringing constantly since Perram House closed. There s a real discrepancy between Toronto and other cities.
Kensington Hospice in downtown Toronto and Dorothy Ley Hospice in Etobicoke are now the city s only residential hospices, providing a total of 20 hospice beds for a population of 2.6 million. (Casey House, which serves AIDS patients, is classified as a hospital.)
By contrast, Saint John, N.B. has 10 beds for a population of 70,063.
Residential hospices are relatively new across Canada, but palliative care experts say they are a crucial option for patients who do not need to be in hospital and cannot die at home. They combine a home-like environment with 24-hour medical care and psychological support.
There are about 193 palliative care beds in Toronto hospitals, but most have a vacancy rate of close to zero and limit stays to 15 days. Patients can stay in a residential hospice for three months or longer.
As for home care, Toronto Central Local Health Integration Network (LHIN) funds three visiting hospice programs. But for patients with complex needs or without a family caregiver, it is only a short-term option.
The vast majority of Canadians say they want to die at home or in a hospice, but about 70 per cent die in hospitals. In the 2011 fiscal year, nearly 5,000 people died in an acute-care hospital in Ontario while receiving palliative care.
When there are no beds available. the patient generally ends up in a higher-cost setting, said Dr. James Downar, a palliative care physician at Toronto General Hospital. Acute-care beds are the most expensive setting in the entire system.
The daily cost of an acute-care bed in a hospital is between $850 and $1,100, compared with about $439 for a residential hospice bed.
Hospice patients receive care free-of-charge, but advocates say the savings are significant for a province trying to balance its books and hospices aren t just more efficient, they re more humane.
Coline Bettson s mother suffered a sudden brain aneurysm in March and moved into Perram House. The first night, nurses brought Bettson hot tea and set up the bed so she could cradle her 96-year-old mom in her arms.
Everything I asked for and she wanted, they agreed to. They couldn t have been more kind and caring, she said. I was stunned and appalled when I heard (the hospice closed).
In 2005, the Ministry of Health announced $115 million in palliative-care funding, including plans to fund the care costs of 34 residential hospices across the province.
Eight years later, 24 of those hospices have been built and receive annual funding of $90,000 per bed. The remainder of hospice budgets between 20 and 50 per cent must be raised through donations.
McCrea, the former Perram House board chair, said fundraising had always been a struggle.
New Democrat health critic France G linas said the ministry should fully fund residential hospices, as it does long-term care.
It s been unacceptable from the beginning, she said. Hospices deal with vulnerable people in their last days of life. It s wrong to let them rely on donations.
Health Minister Deb Matthews said in an interview that the province had come a long way since before 2005, when hospices were entirely self-funded.
We are transforming how we deliver health care, Matthews said. We are committed to investing more in the community sector and getting people out of hospital who don t need to be in hospital.
She said the health ministry dedicated $260 million to community services, including hospice and home care, in the 2013 budget. The Toronto Central LHIN has convened a working group on palliative care access.
Rick Firth of Hospice Palliative Care Ontario said most hospices are able to fundraise successfully, but Perram House may have struggled because it prioritized marginalized and homeless people.
The donations from families don t come in at the same volume, he said. That may be something we need to look at in the future.
Firth said the loss of Perram House will be felt in Toronto for the time being. Two of the hospices promised funding in 2005 were supposed to be in the city, but neither has broken ground yet.
The Toronto Commandery Hospice finally acquired land last year in North York, but is awaiting approval of its zoning application. The Yee Hong Centre for Geriatric Care in Scarborough still has no timeline for opening a hospice.
But Emily s House a long-planned pediatric hospice at Gerrard St. E. and Broadview Ave. is nearing the end of construction at last and hopes to open its doors at the end of May.
As for Perram House, the stunning home of sweeping staircases and vaulted ceilings built by widower Mary Perram in 1887, it now occupies prime downtown real estate, on Wellesley Pl. between Jarvis and Sherbourne Sts.
McCrea owns the home but has said he hasn t made a decision about the property. As a designated heritage home, it would require city council approval to be demolished.
Pete Perram, Mary s 52-year-old great-great-grandson, said the worst-case scenario would be for it to be turned into a condo building.
Mary intended it to be for the good of the people, the good of the community, he said. I hope that, as a legacy to her and to our family, that continues.