Palliative care is improving, but PEI must embrace wishes of the dying

Every year when I come to PEI, lest people dismiss me as "from away," I tell anybody who asks – and many who don't – that my father was born on the Island, part of a long line of Scots who originally arrived here as economic refugees from the Highland Clearances. Like so many Islanders, my father left the farm, headed to the mainland to make his way and returned "home" summer after summer. Many others came back permanently when their working days were done. Looped over generations, that helps explain why PEI has a rapidly aging population.

More than 17 per cent of the Island's 140,000 people are over 65, compared to just over 15 per cent for the country as a whole. In five years, the provincial figure will be 20 per cent; in 25 years, it will be 30. Those figures in a largely rural population are a challenge for Mireille Lecours, palliative-care medical consultant for the province. She has made great strides in improving palliative care by supporting dying patients at home, in community-care facilities, as inpatients in palliative-care units and especially in long-term-care facilities. "Those are people's homes," she says. "They should be centres of excellence for palliative care."

Both the smallest and the most traditional of provinces, PEI has been rightly criticized for its refusal to offer abortion services on the Island and now is showing a similar reluctance to support patient choice in dying, despite the Supreme Court of Canada's ruling last February legalizing physician-assisted death for competent adults with intractable physical or psychological suffering.

Lecours hasn't been invited to any provincial meetings to discuss the issue, even though the Supreme Court's deadline to enact new federal legislation and provincial regulations is six months away. An extension of the deadline "would be the intelligent thing," she says, because "we aren't ready." Pointing out that both palliative care and home care are "extremely spotty" across the country, she argues that every Canadian should have access to quality palliative care before they are offered physician-assisted death. That is her priority, and she is doing her utmost to provide it.

A francophone from a family of physicians in Sherbrooke, Que., Lecours came to the Island initially because she loved to windsurf. Romance, lifestyle and a position as a family physician kept her here. As for palliative care, she learned that death is part of life as a child on a hospital ward: When she was eight or nine, she was diagnosed with renal disease, and doctors, suspecting she had a malignancy, admitted her to a children's cancer ward. She can remember waking up and seeing an empty bed because a young friend had died in the night, and watching a boy who seemed to be disappearing limb by limb until he, too, died. There was the contrast between the forced cheerfulness during family visits in the daytime, and soulful conversations after lights out at night. She learned the ars moriendi from the precipice, only to be yanked back when doctors discovered that she had a congenital abnormality that could be corrected by surgery.

All of this empathy she brought to her practice as a family physician with an interest in palliative care, before switching gears in 2006 to co-ordinate end-of-life care across the province. Under her watch, the province has launched an integrated palliative-care program with five regional centres (for patients living at home, in long-term-care facilities or in hospital) that has grown from 340 patients in 2010-11 to 550 in 2014-15. A palliative home-care drug pilot project, involving more than 500 patients since 2008, saw a 25-per-cent rise in the amount of time patients lived at home rather than in hospital, with an increase in home deaths from 12 to 20 per cent.

A long-term-care project launched at two Charlottetown facilities in 2012 has increased patient, family and staff awareness of the need for advance care planning, opened discussions about treatment options and comfort care, and reduced transfers to acute care for imminently dying patients who have registered with the palliative-care program. A simultaneous acute-care project has decreased the length of time patients spend in hospital by an average of two days and greatly reduced readmissions because the combined efforts of home and palliative-care services mean patients can live at home longer.

The prime jewel in PEI's palliative-care tiara is a $5.5-million standalone hospice on the grounds of the Queen Elizabeth Hospital on the eastern edges of Charlottetown. Lecours – tall, slim, chestnut-haired, animated, with snazzy sling-backed shiny red high heels adding an insouciant flash to her professional white-coated appearance – gave me a tour of the 10-bed facility, which doubles as a centre of excellence for the province. All on one level and wheelchair-accessible, the hospice is patient – and family-friendly. The large patient rooms, all designed for single occupancy, have ensuite bathrooms, chairs that recline into beds for family members and bucolic views across verdant lawns stretching into a thick stand of spruce and birch trees.

On our tour, there is an eerie anticipatory sense because so few of the eight functioning rooms are occupied. "We had a lot of deaths on the weekend," Lecours explains as we stand in an empty room glancing out the window. The hospice has admitted 36 patients since April; all but two have died.

Suddenly, a rangy red fox with a white-tipped tail slinks out of the trees and stares at us like a creature from a Karen Gallant painting. As I drag my eyes away from the fox, I appreciate the metaphorical lure of letting nature take its course. But it shouldn't override autonomy, I think, hoping that PEI will embrace individual choice as well as comfort care.

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