'I'm not no one, I'm his mom'

I think the most engaging presentation at the patient- and family-centred care conference in St. Louis was by Jim Conway, a lecturer at the Harvard School of Public Health.

Jim has held senior positions at the Institute for Healthcare Improvement, the Dana-Farber Cancer Institute and Children's Hospital Boston.

Jim talked about an experience in the 1970s that woke him up to the essential role of parents in the care of hospitalized children.

He was an administrator in radiology at Children's Hospital Boston and explained to a mom that she couldn't accompany her child into the x-ray room. "I don't care who you are, I'm staying with my kid," she said. When he pointed out the sign that said "no-one" was allowed through the door, the mom said: "I'm not no one. I'm his mom."

During his 27 years at Children's Hospital he learned that if there was a discrepancy between a child's hospital health record and the mother's account, they were to go with what the mother said, because "we were only taking care of a piece of that child and she was taking care of the whole child."

Since that time, hospitals that are committed to partnering with families have stopped viewing parents as 'visitors' and allow 24/7 access.

Jim said family-centred care occurs when patients and families are treated as partners in care at every level: from their participation on key hospital decision-making bodies to their input at the bedside. "Patient- and family-centred care isn't an advisory council," he said. "That's just one piece."

Leaders play a critical role, he said, communicating in words and actions that the patient's safety and wellbeing guides all decision-making. The entire system is organized around the choices and needs of patients and families.

Jim shared research that shows that patient- and family-centred care reduces length of stay; lowers cost per case; reduces adverse events; improves employee retention; reduces operating costs; decreases malpractice claims; and increases market share.

A recent study in the International Journal of Health Care Quality showed that hospitalized patients who participated in their care cut adverse events in half: "Among the 788 patients with both patient survey and medical chart review data, there was an inverse relationship between participation and adverse events."

Some leading patient- and family-centred care practices include having patients and family members on boards, starting board and hospital meetings with family stories, and including patients and families in bedside rounds. "Nothing builds will more than meeting your patients," Jim said.

Patient- and family-advisory councils are now mandatory in Massachusets hospitals and 93 per cent of health leaders surveyed in 2010 said the patient experience was one of five top priorities (35 per cent said it was the top priority).

Jim concluded by saying that patients and families are the only people who know the ins and outs of your hospital and that if healthcare is on the table, patients and families have to be there too.

He shared a quote about the evolution of patient- and family-centred care from advocate Martha Hayward:

Do it to me.
Do it for me.
Do it with me.

The conference was run by the Institute for Patient- and Family-Centred Care. They have excellent materials on their website.