“I really had to defend him from the hospital, because their job is to help you live,” said his wife, Judith. “They were constantly doing things that weren't helping him to die: They continued to bring him food three times a day, emptied his garbage and changed his sheets. It's their job to keep the day going.”
The issue became one of quality of life over quantity of life. Mr. van Bastelaar's mind, his wife said, was everything to him. He also wanted control over his death.
“His worst nightmare would be sitting in a bed, not being able to recognize people, not being able to participate,” she said. “He had a physically strong body but something in his brain was diseased.”
Finally, hospital staff gave them a list of Toronto-area hospices. At Kensington, Mr. van Bastelaar was placed on a ground-floor room, and he died on Jan. 18.
As Ms. van Bastelaar puts it: “He came here to die, and he was successful.”
Support in high places
In the six months it's been open, Mr. O'Neill, Kensington Health's executive director, estimates the hospice has already saved Ontario more than $900,000 by keeping patients out of hospital beds.
Such numbers are beginning to attract high-profile attention: Economist Don Drummond noted in his recent report on Ontario's public services that there is a need for more palliative care, in more varied forms, in homes and in residential hospices.
As part of its 10-year review of the federal health accord, the Senate committee on Social Affairs, Science and Technology heard from hospice and palliative-care officials.
Its report will not be complete until the end of the month, but its chair, former Liberal cabinet minister Art Eggleton, told The Globe and Mail, “We need to pay more attention to end-of-life care.”
At a time when hospitals are struggling with patients stuck in beds while awaiting placement, the hospice has managed to free up space in the system.
But to Mr. McFarlane, that's a secondary issue. “[What]excites me the most,” he said, is that “it's taking people at that stage of life and giving them compassionate care.”
So be it, then, if he has to dip into foundation money to fund care for hospice patients and hold golf tournaments and other charity events to keep it going. Like many people in health care, he repeats this mantra: providing the right care, in the right place, at the right time.
“We also believe in another right,” he added. “And it's doing the right thing. … We will not allow this to fail.”
In Ms. Hoffman's case, it certainly did not.
She was placed in a second-floor back room overlooking a courtyard. Less than a day before her death, she lay in bed, wearing an oxygen mask; her soft white hair seemed to melt into the white bed sheets.
She died at 4:44 a.m., both daughters holding her hands. Later that morning, she was wheeled to the front of the hospice for final words before the journey to the funeral home.
“This candle,” said the care director, Ms. Emmerson, “will remind us of her and the light she shone on this world.”
She placed it in the hospice's front window, where it stayed lit for 24 hours. Then Ms. Hoffman was placed into a van.
Her daughter Basia took photos of the staff, hugging them each goodbye.
She said, “It was so incredibly perfect and calm.”
Lisa Priest is a health-issues reporter for The Globe and Mail.