Jane McCredie: Bureaucratic tales

WE talk a lot about patient-centred care these days. It’s embedded in the education of future health professionals, in guidelines and in the rhetoric of policymakers and government.

As the Victorian Department of Health puts it: “Patient-centred care puts the individual at the heart of all that we do in terms of caring for patients, health service design, policy and service delivery.”

The bureaucrats talk the talk, but do they always walk the walk?

Bureaucracies are unwieldy beasts and focusing on the needs of an individual patient doesn’t always come naturally, as is illustrated by a collection of stories I’ve been told by health professionals from various states and territories over the past few weeks (for the record, none of them were from Victoria).

There’s no question that complex organisations need clear rules if they are to work properly, and that access criteria have to be defined if costs are to be contained.

But if the aim really is patient-centred care, then a certain amount of flexibility is needed in applying those rules. And access criteria should focus on need, rather than other, possibly more arbitrary, distinctions.

It seems wrong, for example, that public palliative care services should be rationed according to the disease of an individual patient.

Another area where bureaucratic classification can drastically affect access to services is in the ill defined space between “medical conditions” and “disability”.

People who are considered to have a medical condition can find they are barred from access to disability services, even when they experience a high level of disability.

I was told one story about two brothers born with a severe genetic gastrointestinal condition that meant they were entirely dependent on parenteral nutrition.

The boys were released from postnatal intensive care without provision for home-based support. And, because they were classified as having a medical condition, the family was not eligible to access disability services, leaving the untrained parents to cope (or not) on their own.

Disability advocate Jen Morris has written an impassioned critique of this distinction between chronic health conditions and disability on the ABC’s now-defunct Ramp Up site.

Even harder to accept is the way lines on a map can affect people’s access to care.

A health professional from Kununurra in the far north-east of WA told me at a conference recently about the challenges faced by her patients with end-stage renal disease, most of whom are Aboriginal.

To start dialysis, patients must travel more than 3000 km to Perth, a journey many refuse to make “because they don’t want to die in Perth, away from their country”.

Alice Springs is half the distance geographically (and possibly culturally as well), but these patients can’t go there because Alice is in the Northern Territory while they fall under the WA health system.

Seriously? Surely state and territory governments could nut out a financial agreement to cover these kinds of situations.

And, if disability, palliative care or other services need to be rationed, can’t we find a way to do that on the basis of need rather than on fairly arbitrary, diagnosis-based criteria?

Mind you, none of the examples given to me is quite as bizarre as the one described in response to a recent MJA InSight article.

This doctor’s patient, from Dubbo in western NSW, was apparently told by the Department of Veterans’ Affairs he would only be reimbursed for travel to seek medical care if he went to Newcastle, rather than Sydney, because it was closer.

Fair enough, except that the patient was unable to drive and the only way he could get to Newcastle on public transport was — you guessed it — by transiting through Sydney.

Go figure.
 

Jane McCredie is a Sydney-based science and medicine writer.