Day 1 at family-centred care training

The conference in St. Louis started with breakfast at 7 a.m. this morning.

At a table for family advisors I met two parents who have been working for change for a long time: Nancy DiVenere, president of Parent to Parent USA and Juliette Schlucter, the former project consultant for FCC at the Children's Hospital of Philadelphia. Nancy told me her 35-year-old son had a stroke at birth, but was now a special-education teacher who was married. Juliette has three young adult children, two of whom have cystic fibrosis. One of the latter just ran a half-marathon and the other is an 18-year-old singer recording with producers in Beverley Hills, Calif. Check out her website about curing CF and empowering teens: Singing at the Top of My Lungs.

For a second I felt sad that my son didn't have the same kind of success story, but then I remembered this quote: "Comparison is the thief of joy."

The day was packed with workshops and smaller meetings and I will try to distil what I learned in the 30 minutes I have before meeting the group for dinner.

Family-centred care is about working "with" patients and families, rather than just doing "to" or "for" them.

Our practices need to reflect a continual dialogue with patients and families about what matters. We don't do things because it makes sense for the system, we've always done it this way, or it meets the needs of the doctors.

The key concepts of FCC are: respect and dignity; sharing information in a way that is useful to patients and families; participation in care and decision-making; and collaboration -- not just at the clinical level, but in changing and improving the health-care system.

There is no one formula for FCC because it's based on conversations between patients, families and professionals about what matters at a particular hospital or unit. It has to work in your unique environment and culture. It's not an "add on" but how the organization thinks and operates.

In FCC, the priorities and choices of families drive the delivery of health care. In contrast, we often find the system driving practices (caregivers design it so it works for them); a focus on 'treating' the patient, but not in the context of a family; or a family-focus, where interventions are done "to" and "for" them, but not "with" them.

When families are recognized as equal partners, you get the best health outcomes.

FCC needs to be the strategy and framework for how you improve safety, quality, experience of care and cost-efficiency. It needs to be explicitly stated and part of the strategic plan.

It's not a place or destination, but an ongoing journey.

We must constantly ask: "How does this look from a patient/family perspective?

For example, if we recognize families as partners, we take down signs that suggest otherwise: e.g. Stop! All patients must see nurse first. Please sit on bench until called by nurse.

Families are not visitors and are welcomed at all times. We do not have visiting hours.

One hospital found it saved $1 million a year in litigation fees after it embarked on an FCC culture that promoted partnership and transparency.

"Get started before you're ready." There is no end point, and the sooner you get started, the better.

Here's an example of some patient- and family-centred language used at one hospital in a brochure:

You're #1. We're in a partnership. Involve family in your care.

Too often we have one-way conversations with patients/families.

There were powerful parent speakers who shared positive and negative experiences. One mom described how devastated she and her husband were when they learned their 5-year-old son had to have surgery related to pneumonia after he had endured numerous serious heart surgeries when younger. "The nurse recognized how difficult it was for us and she said: 'Get in bed with your son and you can ride with him to the OR and stay with him till he's asleep.'"

A dad spoke about the difference it made when a doctor openly explained that his adult son was in a coma because he had been given morphine at five times the necessary concentration. "I was stunned that they would tell us. They apologized for the error, and very genuinely. The fact that they disclosed turned us from enemies into allies. We were brought together."

The same dad shared how crushing it was when a brain specialist came to tell them that their son had no brain activity: "He said: 'There's no way. He's as good as dead.' That was a little too blunt and gruelling to be able to absorb."

The same dad spoke about how another physician gave the same news, but in a compassionate way: "She was a parent and she tried to relate to us as parents and said: "The information is not what we all had hoped for."

Personal patient, family and professional stories are the building blocks of FCC. Tell honest stories, we heard, the good, the bad and the ugly.