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Health Quality Ontario report says that dying needs to be “demedicalized and demystified.”

Every patient nearing end-of-life should have access to quality palliative care in the location of their choice, according to an expert Ontario panel.

The report from Health Quality Ontario says that dying needs to be "demedicalized and demystified," and patients and their families need more say and more choice on how their final days should play out.

The call comes just days after the province's Auditor-General described the provision of end-of-life care as insufficient, inefficient and inequitable, and complained that there isn't even good data showing what is currently being done.

"Our best guess is that only about 30 per cent of patients get the kind of palliative care they should," Irfan Dhalla, the vice-president of evidence development and standards at Health Quality Ontario said in an interview.

"We think that if the recommendations were implemented, end-of-life care would be substantially improved," Dr. Dhalla said.

While access to palliative care is poor in Ontario, it is actually better than in much of the rest of Canada.

According to the Canadian Hospice Palliative Care Association, between 16 and 30 per cent of patients have access to palliative care, and while the overwhelming majority of people want to die at home, about 70 per cent actually die in hospital. In addition to making quality palliative care widely available, the new 24-page report, End-of-Life Care in Ontario makes several other key recommendations, including:

  • Patients and health-care providers must make clear care plans, including legal documents like advance care planning.
  • All patients should have a choice about where they want to die, be it at home, in a hospice or in a palliative-care bed in hospital.
  • End-of-life care should be an integral part of medical and nursing school education; family caregivers need better training and support.
  • Clear directives are required about when cardiopulmonary resuscitation should be used on terminally ill patients.

The recommendations were made by the Ontario Health Technology Advisory Committee, an independent group of experts who advise HQO. A second, 47-page technical report, summarizes the evidence of what constitutes quality end-of-life care.

"What's most important is to increase access to end-of-life care. We're just not doing enough now," said Shirlee Sharkey, chief executive of Saint Elizabeth Health Care, a large provider of community care, and a member of OHTAC.

She said another key recommendation is that patients and their families should decide where they die, and that they not end up in hospitals by default.

"In my experience, people want to die in a home-like setting, surrounded by their loved ones. More than anything, they don't want to die alone," Ms. Sharkey said.

Evidence review, she said, did not provide any shocking revelations, but is important because "it allows us to move from 'I wonder' and 'I think' to 'I know' and 'I can.'" Ms. Sharkey said there is quality end-of-life care being provided in Ontario and elsewhere, but it is not broadly available and that creates inequities.

That echoes what provincial Auditor-General Bonnie Lysyk said in her 2014 Annual Report.

"Ontario's palliative-care services developed in a patchwork fashion," Ms. Lysyk said.

"Currently, the ministry lacks information on the palliative-care services available, their costs, the patient need for these services, or what mix of services would best meet patient needs in a cost-effective manner," Ms. Lysyk said, adding that while the province seems to have a number of initiatives to improve end-of-life care, they are not co-ordinated.

The Auditor-General said that the provision of palliative care costs $1,100 a day in an acute-care hospital bed, $630 to $770 daily in a palliative-care unit, $460 in a standalone hospice, and about $100 when at-home care is provided.

The audit said that using accepted standards of practice, Ontario – where there are roughly 90,000 deaths a year – should have about 1,080 beds in hospices and 270 palliative-care beds in hospitals.

Currently, there are 271 hospice beds in the province and there is no good information on how many palliative-care beds there are in hospitals.

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