National Post Canada article on Emily’s House

"How surprisingly cheerful pediatric hospices help sick children enjoy the last days of their short lives"

(Photo by: Matthew Sherwood for National Post)

Article by: Tom Blackwell
Posted: December 6th, 2013

To read the article on the National Post website please click here.

With her shock of dark hair and wide, searching eyes, little Stephanie DeSouza is a charmer.

As the six-month-old wriggles in her parents’ arms, surrounded by brightly coloured toys and play equipment, it is almost possible to ignore the tubes threading out of her nose, one delivering oxygen on a constant basis, the other food.

Born with a complex heart defect, however, Stephanie is living on borrowed time, already surviving months past her grim, terminal prognosis.

The DeSouzas are thankful, at least, that those months have been spent in Toronto’s first, newly opened hospice for children, an unexpectedly cheerful place and part of a burgeoning network of such facilities across Canada, as the health-care system offers sophisticated palliative care – often thought of as a service for mostly elderly adults — to young people, as well.

In stand-alone, homey buildings in Ontario, Quebec, Alberta and B.C., pediatric hospices are dedicating themselves in part to patients many would have trouble even contemplating: children living out the last stages of disease-shortened lives.

In turn, staff say they witness an outpouring of affection within families and a remarkable bravery and grace in the young patients that makes the work more life-affirming than heart-breaking.

Among other services, Emily’s House in Toronto provides 24/7 nursing care, “play therapy,” a place for family members to sleep and the services of a chaplain. Family or staff have even brought in cakes for baby Stephanie, lit candles and marked milestones that may never be.

“We celebrate her birthday every month, because for us it’s a miracle that she’s still alive,” said Cherry, her mother. “It’s a great experience that we are here. It’s amazing.”

Hospices also provide respite care for parents whose children have a “life-limiting” illness or condition and require intensive, sometimes “exhausting” care at home, but are not at imminent risk.

Still, the concept has been relatively slow to take off and even now the half-dozen Canadian hospices depend largely on private donations to flesh out limited government funding. A recent medical-journal article questioned whether they were a wise use of scarce health-care dollars.

“We’re a very death denying society: we talk about life, we don’t think about death, let alone children dying,” said Rauni Salminen, head of the Toronto facility.

“Sick Kids [Hospital] still has children who die every year but you don’t see that on their commercials. That’s because we want cure, we want research, we don’t want kids to suffer. But the reality remains that when they do, and there is no cure, where do they go for that extra support?“

For kids at the end of their brief lives, the hospices strive to create a warm, family-friendly environment, epitomized by the experience earlier this year of a young woman in the last stages of cancer at Vancouver’s Canuck House.

The teenager, her parents and an adoring four-year-old brother would gather in the open kitchen/dining room for animated meals when she first arrived, recalled Margaret McNeil, the facility’s CEO. As the disease progressed, she became bedridden, but had her family close by until the end.

“It was about two o’clock in morning and it was clear this little girl was close to death,” said Ms. McNeil, whose voice quavers a bit as she talks about her young patients. “The last thing she did was reach out, touch her brother’s hair and blow him a kiss. And then she took her last breath.”

Yet some are still not convinced that hospices, relatively expensive to run with high staff-to-patient ratios, are the best way to give children palliative care.

A survey of oncologists and parents whose children had died of cancer at Toronto’s Sick Kids Hospital found that home was the first choice as the place for their kids’ to end their lives, followed by hospital, with free-standing hospices last. The study, published in the journal Pediatric Blood Cancer this October, was conducted before Toronto actually had a pediatric hospice, however, gave only a brief description of the concept and didn’t address respite care.

Still, it suggests more research is needed on where to allocate scant funds, said Dr. Alisha Kassam, a pediatric oncologist and co-author of the paper.

“Maybe it will show that there is a cost benefit [to hospices],” said Dr. Kassam. “But if home and hospital are the best choice, you wonder if you could do a better job devoting resources to the top-two most preferred sites.”

The idea of pediatric hospices was born in Britain in the 1980s, and that country now has over 40. North America has taken time to follow suit, with just a couple in the U.S. In Canada, facilities have opened over the last 18 years in Ottawa, Milton, Ont., Montreal, Calgary and Vancouver, whose Canuck House was the continent’s first pediatric hospice.

Canuck offers a variety of supports, from outings at local ski hills to an in-house school, all designed to encourage children to embrace life, “whether a life is measured in days, weeks or months.”

Its medical care also sets it apart from hospitals, bending the usual rules to improve life for children with limited quantities of it left, said Dr. Amy Mabie, a physician at the Vancouver hospice. One 17-year-old cancer patient this fall wanted to visit the beach, despite being permanently tethered to a catheter that delivered a massive 8,000 milligrams of pain-relieving morphine a day directly to her spine.

No hospital would let her leave, especially to visit the beach, because of the fear of infection, but Canuck House decided to make it happen.

“We sent two nurses with her and the little pump delivering her medication and she had a great time,” said Dr. Mabie. “She ended up dying within 48 hours of going out on her outing. [But] she actually was able to spend a really nice afternoon with her family.”

Another teenage cancer patient at the facility earlier this year suffered from intractable pain and, through a Google search, discovered that nitrous oxide – laughing gas — might help. Dr. Mabie did her own research, agreed to try the unorthodox technique and ordered some from the nearby B.C. Women’s Hospital.

It made the boy’s final weeks more comfortable, she said.

Cherry DeSouza, baby Stephanie’s mother, had no warning of what was to come while pregnant with her first child; the last ultrasound she underwent revealed nothing amiss. Yet the girl was born with tetralogy of Fallot, a rare combination of four different heart defects. Many patients who have the condition can, with surgery, live to adulthood, but doctors have said they cannot operate on the infant’s under-developed heart.

She was given two months to live, but it was at about that point that Emily’s House opened, and Stephanie moved in. She has thrived since, say her parents.

Many of the patients served by hospices, though, may have years to live with metabolic, genetic, chromosomal and central-nervous-system disorders that nevertheless can be debilitating, and hugely demanding for parents.

Stephanie Clayton, 11, was born with omphalocele, a condition in which some of the organs are outside of the abdomen. Almost 20 operations and hundreds of invasive procedures followed. She also suffers from chronic bowel obstructions and, currently, sometimes-excruciating pain, said her mother, Denise Clayton.

Her condition is not acute enough to put her in hospital, and at home with her two sisters – one nine and one 14 — she cannot escape the noises and commotion of a young family or even the cooking smells that can make her nauseated.

For the others, there is the stress of looking after a loved one with “tons and tons of medical problems,” and the sacrifices of siblings who do not go swimming or even run through the sprinkler on a hot day because Stephanie cannot, and they don’t want her to feel left out.

So she has been spending three or four days a week at Emily’s House for respite care, with great results. The girl is so comfortable there, she suggested her parents donate to the hospice instead of giving her gifts this Christmas.

“We see a tremendous progress in Stephanie, unbelievably so,” said Ms. Clayton. “The pace is hers. She dictates whether she’s going to get up now … It’s much more laid-back [than hospital], calming, soothing, in a very beautiful environment.”

But what of the nurses, therapists and doctors who work so closely with patients whose time, in some cases, can be cruelly curtailed?

“When you tell people what you do for a living, they’re shocked, they don’t know what to say,” admits Joanne Gallevo, a nurse at the facility.

But gravely ill children appear happier and more comfortable, and their families less stressed, than those in hospital, and helping augment their quality of life is job satisfaction enough, she said.

There is a more existential reward, too.

“I could never work with children who are being abused or neglected: to me that is very sad and tragic,” said Dr. Mabie. “Here I see how much families love each other and mean to each other. To me that is very life affirming.”

Pediatric hospices also offer an ongoing window on an aspect of humanity that, thankfully, is rare enough that few witness it: young people forced to confront their own mortality — often with incredible courage.

“The amount of grace in our children is remarkable,” said Ms. McNeil, the Canuck Place CEO. “People say ‘How do you work here?’ I say, ‘I work in a place of awe and a place of wonder and a place of amazement.’ ”