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end of life

Basia Hoffman (facing the camera) hugs social worker Maxxine Rattner during a visit with her 90-year-old mother, Andrée Hoffman, who spent her final days at Kensington Hospice, a 10-bed palliative care facility that opened last summer in Toronto.Peter Power/The Globe and Mail

Andrée Hoffman lay on a gurney, the outline of her body visible under a floral comforter. Her daughter Basia Hoffman, in her 50s, was a few feet away, playing Beethoven's Moonlight Sonata on the piano, hours after her 90-year-old mother's death. No one was in a hurry to go to the funeral home.

When the time finally came, those who loved gathered around her body for a procession through the halls of Toronto's Kensington Hospice to the front door. In her final days, the staff had given her oxygen to ease her breathlessness, narcotics to help with pain and baths to keep her clean. They even cooked breakfast for her family – the scent of pancakes and eggs lingered in the air, a smell of home.

"You almost feel guilty," said Basia's sister, Tatiana Hoffman, 56, "because they make it so beautiful and wonderful. But I feel so much relief she is out of pain."

Nine days earlier, Tatiana and her 18-year-old daughter Carina had found the elderly lady slumped at the breakfast table in her Toronto home. Her right eye and bottom lip were drooping. She was taken to hospital, where they found she had suffered a devastating stroke. A few days later, she was brought to this 10-bed residential hospice.

Make no mistake, she came here to die, as 46 others have since it opened in late August. Each one of them had a procession like hers, making death not an institutional problem to be dispensed with, but an event to mark.

Over four weeks this winter, a Globe and Mail reporter and spent time at Kensington Hospice, to observe the model that many experts consider the future of end-of-life care – a more compassionate, all-encompassing experience for patients and families, and more affordable and sustainable for the burdened health-care system.

Palliative care in a hospital provides symptom relief and comfort, as a hospice does, but hospital stays are generally limited to around 15 days. A residential hospice is a standalone institution that can keep residents for longer – usually around three months – and provide bereavement support to the family up to a year after the resident dies.

In every province, health-care costs are consuming an ever-greater proportion of spending – it's not inconceivable that the numbers could reach 50 per cent in the future. And late life is particularly costly: One study found that 25 per cent of all health-care costs are devoted to patients in their last year of life.

How to deal humanely with that problem is a crisis facing the whole country. Part of the solution may be for more of us to rule out ahead of time the use of "heroic measures," those extreme technological steps to prolong life no matter how marginally and expensively.

Another element, represented by the hospice movement, is to improve what one might call the quality of death.

While most people would prefer to die at home, most can't: About 70 per cent of patients die in hospital, places more focused on saving lives than on ushering in their endings. The number of palliative-care patients cared for in acute-care hospitals is increasing, from 84,815 two years ago to 91,901 in 2010-2011.

A Royal Society of Canada report has found that while 95 per cent of terminal patients would benefit from palliative treatment, as many as 70 per cent of Canadians still lack access to such programs. With the aging population, those numbers are only expected to intensify.

Hospices provide a more home-like experience, while costing only about $439 per patient a day, compared to $850 to $1,000 in a hospital bed.

There are at least 63 residential hospices across Canada, ranging from a few beds in a home stitched together with volunteers and visiting doctors to 10-bed institutions. Because the model is not fully established and integrated into the health system, only some hospices receive provincial funding. Those, such as Kensington, that run mostly on charity are arguing that it is time for that to change.

"We've been coming out and saying, if you are providing a health-care service, then it should be part of the funding cycle," said Sharon Baxter, executive director of the Canadian Hospice Palliative Care Association (CHPCA), by telephone from Ottawa.

Hospices are also expanding their range: While cancer patients are the most typical residents, Ms. Baxter imagines more and more of them will also care for patients with cardiovascular and neuromuscular disease; in fact, Winnipeg has a four-bed hospice to care for those dying of ALS (Lou Gehrig's Disease).

All of them offer home-like atmospheres, with sleeping chairs in each room for family members, a play area for children, and a kitchen that patients and their families can use at their own discretion.

"Dying in a residential hospice is lovely," Ms. Baxter said. "That's what they do."

Ontario Health Minister Deb Matthews described herself as a "huge believer" in hospices, saying it's "really important that we give people the best possible death. But she added, "I think we've got a ways to go before we get there."

Though hospices are part of the province's plans, she noted the tough economic times: "I don't want to underplay how challenging our fiscal reality is right now."

A chapel's mission renewed

The Kensington Hospice is housed in a chapel of dark wooden beams and yellow stained glass that was built in 1888 as part of St. John's Hospital for Women. Later, when the facility became Doctors Hospital, it was the auditorium.

Brian McFarlane remembers his first meeting in this room, addressing staff as Doctors Hospital's chief financial officer in 1969.

Three years later, he became chief executive officer. When the hospital was decommissioned in 1998, as part of a government restructuring, Mr. McFarlane led its reinvention: He turned it into a long-term and ambulatory care centre, under the umbrella of the non-profit Kensington Health.

The former chapel, however, sat empty for about a decade. Vagrants occasionally smashed the lock, taking up residence, as did neighbourhood rats. There were other ideas – youth programs, a mission – but finally in June, 2007, board approval paved the way to renovate it at a cost of $6.5-million as a hospice.

Kensington Health expected that government would one day recognize its value and fund the care of patients. So far it has not: Ontario's hospice subsidies per year are around $18.2-million, but for now the list is limited to the hospices operational in 2005, when funding began.

Down the hall from the chapel, Mr. McFarlane looked in on a back room overlooking the courtyard to say hello to a patient. Sitting up in bed was , a tall 55-year-old with a shock of white hair, who arrived on Aug. 23, as the hospice's very first resident.

At the time he had a life expectancy of two to three months, due to a colorectal cancer that had spread.

But while the route for many patients, such as Ms. Hoffman, follow an expected arc, dying also can be very unpredictable: Some patients who seem stable suddenly go into distress and die; others rally back after seeming on the brink.

As it turned out, Mr. McCarthy's carved granite headstone got to the cemetery before he did. The choir rehearsing hymns during Christmas was still singing them into Valentine's Day.

The hospice dog, a black-and-white Havanese named Douglas, became so attached to Mr. McCarthy's wife, , on their regular walks through the leafy residential area that it all but ignored its owner, hospice-care director Debbie Emmerson.

Meanwhile, Mr. McCarthy, whose career included posts as chief of staff in the Ontario government under Bill Davis and as an executive at the Canadian Jewellers Association and Pizza Pizza, made himself at home.

There was a bar cart with Irish whisky and a coffee machine. During Christmas, he had a wreath hanging on his room door for visitors, and another on the television so he could see it every day.

The family Calico cat, Marlowe, came on weekends, along with her litter box and food bowls. When the overhead lights were too bright, a worker installed a dimmer.

Even Bill O'Neill, the executive director of Kensington Health, got involved, hanging a framed picture.

The gift of extra time

After the first two months, seeing Mr. McCarthy exceeding expectations, hospice-care providers met with his medical team to decide whether he should be placed somewhere else.

"It was clear to us that the best place to care for Andrew was in our hospice," said Ms. Emmerson. "The only other alternative was the hospital, as he was not able to return home."

Ms. Kupina, meanwhile, made it her mission to make her husband's last months remarkable, bringing in dinners from upscale restaurant Scaramouche.

"I'm very lucky," Mr. McCarthy said one day, pointing to a picture on his tray table of Ms. Kupina on their wedding day. It looked, he said, like one of those stock photos of a beautiful woman that you get when purchasing a frame, except that, in this case, she was all his.

Ms. Kupina planned his funeral in detail, as she explained over a large bag of red licorice one afternoon more recently – right down to the exquisite brochure with a Celtic braided ribbon and shamrock pin.

"I wanted something special," she said: Standard-issue funeral-home booklets simply wouldn't do.

Mr. McCarthy initially had participated in the funeral arrangements, but then found them too upsetting to discuss.

On Feb. 12, nieces and nephews came in to read homemade Valentine's cards and sing karaoke. Mr. McCarthy's spirits seemed good, his attention interrupted occasionally by golf on the flat-screen television. He even imbibed a little Irish whisky. Ms. Kupina handed out loot bags of candy.

The next day, however, Mr. McCarthy was confused. He wasn't talking and he wanted no food or water. Ms. Kupina placed ice chips in his mouth for moisture.

For the next few days, Mr. McCarthy had trouble sleeping, despite medication, and seemed anxious.

"He wanted to die. He said: 'You've got to help me, you've got to pull the plug,' " Ms. Kupina remembered. "I told him, 'There is no plug.' "

She asked the Catholic priest who was scheduled to conduct the funeral service to come and reassure Mr. McCarthy, and spoke to the palliative-care doctor about adjusting his medication. She was with him until his last breath on Feb. 20, almost six months after he came to the hospice.

"One of the things that was so important to us," said Ms. Kupina, "was that as much as he went there to die, he went there to live."

Knowing how to die

Pain is the most common concerns of the dying, said Roger Ghoche, a palliative-care physician at Toronto Western Hospital, who also works at Kensington Hospice as part of its partnership with University Health Network. Restlessness, shortness of breath, nausea and vomiting, constipation, loss of appetite, insomnia and delirium are among the other most common symptoms.

Where most doctors focus on treating a disease, a palliative-care physician focuses on managing symptoms and allowing the body to do what it knows how to do.

"In the same way that a newborn knows how to be born and … do what it needs to do at the beginning of life, the body knows what to do at the end of life," said Dr. Ghoche.

"It knows how to shut down, stop some of the organ functioning. It knows how to die. And because it's a process the body knows, it does it generally comfortably."

But that does not mean that most patients know how to navigate end-of-life care, said Ms. Baxter of the CHPCA.

"Right now, we have a very, very fragmented system," she said. "So if you need hospice [or]palliative care and you haven't been referred, you have no way of knowing where to go. It requires a lot of search in a time of crisis."

Even when information is provided, it can be hard to know what to do and where to go. That's what Judith van Bastelaar experienced when her husband, 67-year-old Jos, was in the hospital in terminal condition. He had been healthy until developing an infection in his brain a week before Christmas, necessitating complex surgery. A subsequent infection in his nasal cavity required a second operation that he wasn't willing to undergo.

"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.

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