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Access to palliative care needed for all those nearing end of life, says report

In a report released Monday, Health Quality Ontario said 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.

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.

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.

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.”

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.

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.”

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.”