How to fix end-of-life care, from those who provide it

Posted on June 2, 2015 in Health Delivery System -News/Politics/Politics Insider
Jun. 02 2015.   André Picard

“Access to palliative care in Canada is highly variable: It depends on where you live, how old you are and what you are dying from.”

That is the blunt conclusion of a new survey of Canadian physicians who provide end-of-life care. (The survey was done by the Canadian Medical Association, the Royal College of Physicians and Surgeons, the College of Family Physicians of Canada, and the Technology Evaluation in the Elderly Network.)

That these shortcomings exist is, sadly, not a surprise. Rather, it just the latest reminder that Canada is not a very good place to die.

We know already that, overall, only between 16 and 30 per cent of Canadians have access to palliative care. There is much frustration from patients and their family members that they cannot die when, where and how they want.

Almost all patients who get palliative care are older adults with cancer. Availability of services varies by province, and by region. The new survey suggests that Nova Scotia and Alberta are best – because they provide specialized, team-based care – but that Quebec is a leader in providing palliative care in the home. In Canada, you are twice as likely to have access to palliative care if you live in an urban area rather than an rural one.

In recent years – and since the Supreme Court ruling in February that struck down the assisted death provisions of the Criminal Code in particular – there has been a lot more public interest in palliative care.

But people don’t know where and how to get the end-of-life care they want. And they don’t really understand why we fail so miserably in providing a good death.

From a policy, political and medical perspective, the current situation makes no sense. Providing palliative care is cost-effective, more humane and results in greater satisfaction with the health system.

The benefit of the new survey is that it provides some insight from a group we rarely hear from – the providers of palliative care.

The first observation that jumps out is that we don’t have a clear idea how many of these providers there are. There are 78,000 doctors in the country but the Canadian Society of Palliative Care Physicians has a mere 350 members. We know 350 is way too low; but we don’t know how many doctors do palliative care. What that number does tell us is that there are few physicians who do palliative care full-time. That’s not surprising because the sub-specialty of palliative medicine has only recently been established.

What the survey shows is that the vast majority of palliative care services are delivered by physicians who dedicate only a few hours a week to end-of-life care, principally family doctors, hospitalists and anesthesiologists.

They don’t necessarily have specialized training, and they’re not paid particularly well, especially for a service that can require being on call 24/7.

In short, there is no co-ordination or organization.

In those circumstances, how do you ensure that quality palliative care is provided to patients?

The medical groups that sponsored this survey say there are four key areas that need to be addressed :

– An adequate palliative medicine workforce is needed. Physicians providing palliative care services must be trained and assessed to ensure they are capable of providing quality care. They need to work with other health professionals on interdisciplinary teams, and have access to in-hospital beds and services, after-hours schedules and supports, and community supports and services.

– More palliative care education and training is needed, especially for primary care providers. Because there are so few specialists, most palliative care will be provided by family physicians. They need to be adequately supported, with both resources and compensation, to meet patients’ demands.

– Palliative medicine needs to be a distinct discipline. As patients become more complex, the discipline of palliative medicine needs to be expanded. Medical schools must also emphasize end-of-life care to improve how we take care of patients living with, and dying from, incurable conditions.

– Minimum palliative medicine standards are required. National standards for practice, including guidance for interdisciplinary care, hours of coverage etc., need to be developed. Different strategies are needed for rural and urban settings. Given the aging population, there also needs to be better workforce planning so the palliative care needs of all patients can be met.

None of this is going to happen overnight. Yet there is some urgency. There are about 250,000 deaths a year in Canada and, by 2035, that number will exceed 375,000.

The new survey provides some valuable new data and insight on how we can better provide for the palliative care needs of Canadians. But it’s just one part of the puzzle.

As Dr. John Muscedere, scientific director of the Technology Evaluation in the Elderly Network (TVN) said: “The real work is just beginning.”

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