Issue 4 / 7 February 2011

WHY is it so hard to get our act together on palliative care?

We’re talking about an intervention that improves patient and carer wellbeing, reduces costs to the health system, and may even extend life expectancy — yet we struggle to offer it to many who would stand to benefit.

Melbourne oncologist Ian Haines writes in this week’s MJA that referral to specialist palliative care for terminally ill people still seems random and discretionary in Australia, an option “sometimes called on when all possibilities for life-extending treatment have been exhausted or cannot easily be accessed”.

That’s despite good and growing evidence of the benefits of referring patients to palliative care early, even while other treatments are still being pursued.

Haines cites two recent US studies that, overall, found improvement on every measurable outcome for patients with advanced cancer who received such early referral — better quality of life and fewer symptoms of depression for patients, less aggressive end-of-life care, and improved wellbeing for carers.

As Haines writes, if an expensive new drug offered outcomes like that, it would justifiably be sold as a major advance in patient care.

So what are the barriers?

Of course we still don’t have the resources or qualified staff to deliver services to everybody who needs them, despite the federal government announcing some additional funding last year.

And our fractured health system doesn’t help. As Palliative Care Australia put it, in a submission to the government last month:

Currently, in many acute settings in Australia, patients with palliative care needs are not identified and are thus not appropriately referred or are referred for inappropriate treatment. There is limited discharge planning and coordination of subsequent care. As a result, patients may not be provided with adequate care, may face unreliable transitions between services, and find it difficult to navigate the complexities of the healthcare system.

Which raises the vexed issue of hospitals and whether they, and the clinicians who work in them, could do more to ensure patients are referred early and receive the services they need.

A 2008 survey of Australian oncologists and other specialists managing patients with advanced cancer found that stated support for early referral to palliative care did not always translate into action.

More than two-thirds of the 699 specialists responding to the survey believed early referral was beneficial, and nearly half said all patients with advanced cancer should be referred to specialist palliative care.

But only a quarter of the specialists actually referred more than 80% of their advanced cancer patients.

Most of the referrals that did happen were for relief of physical symptoms. Despite the evidence of psychological benefit, referral for psychosocial reasons was rare.

GPs, who can also refer terminally ill patients to specialist palliative care services, were not included in the survey.

So maybe we can’t blame it all on governments and bureaucrats.

If palliative care is going to take the place it deserves in our health system, that could require more action from clinicians too.

Jane McCredie is a Sydney-based science and medicine writer, and author of Making girls and boys: inside the science of sex, published by UNSW Press.

Posted 7 February 2011

2 thoughts on “Jane McCredie: Barriers to a major advance

  1. Sue Ieraci says:

    Palliative care is surely a crucially important service – including in the very elderly as well as cancer patients. What we should be measuring, though, is not how many specialists referred people, but how many patients got to access palliative care. How realistic is it to do such a study without including GPs or hospital junior medical staff?
    Without devaluing the need for palliative care access, this type of study is symptomatic of much bureaucratic policy-making – all about process and not much about outcome.
    Access is not just about referral, it’s also about supply.

  2. Sally Tsang says:

    On the subject of barriers to people receiving good palliative care I recently came across this excellent article by the US surgeon-author Atul Gawande:
    It was an engrossing and insightful read.

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