“And I want one at the hospital, one here at the nursing home and one with the GP.” P and I have just been talking about the breathing difficulties that led to him being hospitalized last week. He has advanced lung cancer, and was hospitalized for an acute infection. He has no family nearby, and just a few friends who, like him, are wheelchair-bound residents in the aged care facility. While in hospital, he was asked about his wishes regarding resuscitation. He reminisces that at the time, the doctor was abrupt about the discussion. But his concerns are more practical now. He’s been discharged back to the aged care facility, but he can foresee that he may soon end up back in hospital.

“…but when you come here, you don’t get a choice about which doctor you see”. There is a strained tone in his voice, with more than a hint of frustration. He doesn’t want to be resuscitated, and if possible, he would prefer not to go back to hospital. His recent efforts to communicate this have been stymied by care staff who are hesitant to discuss dying, and an ever-changing rotation of visiting locum GP’s, none of whom seem to have time to follow up the documentation in the hospital.

“But what if the ambulance gets called?” he asks. “Will they know?” He (rightly) wants to be assured that the discussions he has had in the hospital are passed on to everyone in the healthcare team. I promise to check with the care staff and find out what can be done. I call past the office of the nurse in charge on my way out of the building.   The nurse looks to his colleagues. “Well we know he went to hospital last week. But we haven’t had anything from them to tell us what they did. He hasn’t got one of our forms filled out. And the doctors don’t like it when we discuss resuscitation. I’ll ask the locum to check, he’ll be in on Friday.”

This story illustrates a struggle that many patients face. Much is written about the difficulties faced by health professionals broaching an advance care planning discussion, but comparatively less attention has been directed to the challenge of ensuring that these discussions translate into clinically meaningful differences in the patient’s care.

Oregon has had an electronic registry for advance care plans in place since 2009. In Western Australia, the provision for a registry of advance health directive documents is legislated within the Guardianship and Administration Act, but little progress has been made in this area. Arguments that it is impractical or too expensive have been replaced by more insidious suggestions: “the patient might have changed their mind”. Certainly this is possible, but the error of commission still appears to trump the error of omission, even though the latter appears to be happening every day in hospitals and aged care facilities around Australia.

I would argue that we have an obligation to make efforts to ensure that P’s advance care plan will be available to everyone in the healthcare team, communicated across organizational boundaries, and respected by clinicians at the bedside. This effort should go hand in hand with the efforts that are currently being made to encourage patients to discuss their treatment wishes. The momentum for this effort can be driven by clinicians, researchers, consumer advocates and policy-makers.

Patients should rightly ask “where will my plan go?” and we should be ready with a clear answer.

Craig Sinclair @craigbsinclair