In a recent column in Healthy Debate, patient advocates Zal Press and Dawn Richards make a strong case for creating a minister’s patient and family advisory council. The concept is admirable and long overdue. But to ensure that it works, and is not just more window dressing, the current reality of patient and family healthcare interaction also needs fundamental change. Here’s the comment we posted in that regard in response to the Press/Richards initiative.
Who could disagree with the idea of according patients and families the role they deserve in every aspect of healthcare policy and delivery? But a seat at the table, where patients and families have a genuinely transformative voice at least equal to all the other healthcare inputs government receives? Not likely to happen.
The fact is patients and families who advocate for recognition and respect have never been welcome in the building, much less in the inner sanctum where healthcare policy is created. And there is a yawning gap between the theory of patient and family advocacy and what actually occurs in the clinical setting that is likely to keep it that way.
Just after I discovered my mother, then 89, had been left flat on her back while on life support in one of Canada’s leading trauma centres, with pools of fluid overflowing from her mouth onto her gown and bed, I saw all these posters on the walls reminding clinicians about the dangers of ventilator-associated pneumonia. Keeping the patient’s bed at a proper angle and not leaving them lying flat was at the top of the list of things to do. But in my mother’s case, her care team didn’t, and she developed ventilator-associated pneumonia. It was a pretty easy patient safety protocol to follow, except this giant teaching hospital not only could not be bothered, but it strenuously resented being questioned as to why it departed from this standard, while making me out to be the offending party. I didn’t know it at the time, of course, but this was just the beginning of a long cascade of breakdowns and errors — for which there was never any apology or truthful explanation — that eventually left my mother terribly disabled.
Odd, perhaps, but I didn’t find the other messages on the walls that encouraged patients and families to speak up and voice their concerns to be particularly consoling. It takes more than a willingness on the part of walls to listen in order to put patients and families first.
The point is that until the infrastructure of healthcare accountability, which is currently crumbling under the weight of entrenched professional interests, hospital cost-cutting measures and a growing army of high-priced lawyers who are paid with public funds to help hide inconvenient truths, is rebuilt, no amount of table talk is going to make a difference in the experience of patients and families. Only strongly voiced public pressure, and an unrelenting focus on the human and financial costs of avoidable hospital errors — the third leading cause of death in Canada and the United States — and the culture of cover-up that allows them to continue, will achieve that goal.
Where you get to sit depends on where you stand in the advocacy of patient protection. And for too many, that means being left out in the cold.