Palliative care access needed for all nearing end of life, report says

Dramatic improvements are needed to provide quality palliative care for all patients facing the end of their lives, including boosting the number of health providers trained in specialized care of the dying, says an Ontario health advisory agency.

In a report released Monday, Health Quality Ontario said that although Canada ranks relatively high on an international index measuring "quality of death," hundreds of thousands of Canadians have no access to co-ordinated end-of-life care.

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Yet the issue is becoming more pressing due to the aging population: by 2026, the number of Canadians dying each year will increase by 40 per cent to 330,000 people, with each death affecting the well-being of five other people on average — families and loved ones — or more than 1.6 million people in all, the report says.

"There certainly are some real pockets of excellence," Dr. Irfan Dhalla, vice-president of Health Quality Ontario, said of the availability of comprehensive palliative care.

"But there are also areas in Ontario where patients don't have access to that kind of care, and the best estimates are that only about 30 per cent of people who are dying have access to specialized team-based palliative care," said Dhalla, who's also an internal medicine specialist at St. Michael's Hospital in Toronto.

Lack of preparation

Polls have shown that most Canadians want to die at home, surrounded by their loved ones. But most people end up dying in hospital, he said. "So there's a mismatch there that suggests that we're not providing everybody with the care that they would ideally like to have."

One major reason is that many patients don't have discussions with their primary-care doctors or specialists about where they want to die and what kind of medical interventions they want as their lives come to a close.

What happens at the end of someone's life often results in a very powerful memory, either a positive memory or a negative memory, of how that person lived and also how the health-care system served that person.- Irfan Dhalla, vice-president of Health Quality Ontario

The report cites one study involving five Canadian hospitals, which reported that fewer than one in five people had these conversations with their health-care provider. Yet those who discussed care planning had higher overall satisfaction with communication and decision-making, compared to those that did not.

Dhalla said health-care providers should have such a conversation with patients with a terminal illness relatively early.

"That certainly happens some of the time, that patients who are nearing the end of their life will have that kind of discussion with their physicians," he said. "But many times, that does not happen and then a patient will show up in the emergency department very ill, clearly having been ill for some number of months or even years."

"The outcome is predictable, yet nobody will have had the discussion with the patient to establish what kind of care the patient would have wanted near the end of their life, and at that point it's often too late."

'Death is an intensely personal experience'

If the patient is unable by reason of their illness to express their wishes — and if those wishes haven't been relayed to family members — the person may end up with measures such as life-support that they might not have wanted, he said.

For instance, the report cites a survey which found that 70 per cent of hospitalized elderly patients wanted comfort measures instead of life-prolonging treatment. However, more than half were admitted to intensive care units.

"Patient choice and preferences are essential to the delivery of high-quality care," said Dr. Joshua Tepper, president and CEO of Health Quality Ontario and a family physician who treats patients at all stages, including as they near the end of their lives.

"In order to guarantee the best care for patients, it is necessary to recognize that death is an intensely personal experience which must be guided through discussions in advance with medical professionals and loved ones."

The report also provides evidence to support the need for public discussion about the normalization and de-medicalization of death and dying.

It says a 2013 Harris/Decima poll found 55 per cent of Canadian adults had never had a discussion about end-of-life care preferences with either a family member, friend, doctor, lawyer, or financial adviser. Most respondents said they were reluctant to broach the topic for fear of upsetting family members and not knowing enough about their options.

A continuum of care

But Dhalla said planning end-of-life care is important to optimize patients' quality of life, as many will need a range of services to manage pain and other symptoms and to provide emotional and spiritual support for both themselves and their families.

Rick Firth of the Canadian Hospice Palliative Care Association welcomed the report, saying that because of the country's aging population, the need for quality end-of-life care that provides comfort to patients and their loved ones is rapidly escalating.

Those services can be provided by multidisciplinary teams in the home, in community-based hospices and in palliative-care units in both hospitals and long-term care facilities.

"What's important in our experience, looking at a system level, is that in any setting where someone may be expected to die, there should be an adequate hospice palliative program in place, and there's a continuum of care from the home to residential hospices, long-term care and in hospital," Firth said. "And patients may come in and out, depending on their illness."

Still, he said, "it's on everybody's agenda to provide more care at home as a way to sustain the health-care system."

Tailoring care to families

For those whose deaths can be managed in their home, team-based care is the ideal, said Dhalla, noting that it not only can enhance the quality of a person's final days, but it is also less expensive than hospital-based end-of-life care.

But he stressed that there is no one-size-fits-all scenario for dealing with a loved one's death, especially if the person has complex medical requirements.

"Every family is different, but for some families it can be highly distressing and what happens at the end of someone's life often results in a very powerful memory, either a positive memory or a negative memory, of how that person lived and also how the health-care system served that person."

"That's why we need to tailor the care to individual patients and individual families. There's no doubt that the best place for some people and for their families is in a hospital or in an in-patient palliative-care unit or a hospice. Not everybody should be dying at home."