Monday, May 2, 2011

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.


I've worked for years on these issues with an organization called the National Institute for Children's Healthcare Quality, based in Cambridge MA. It's good stuff and makes one hopeful that change is happening --

Bravo to you for participating and helping to spread the word!

Thank you for this quote is very thought provoking. We do compare and we shouldn't. Each child is different and brings with them their own special gift.

I remember when Savannah started to lose her abilities one by one and we had a visit from friends that had a 'normal' child the same age...her BFF. It was so so painful to look at her and compare and see what Savannah couldn't do anymore. It is still a demon of mine today as I see other children that are the age she would've been today. Next time, I will remember your quote.

Savannah taught me so much about life and selflessness through her special needs and health issues...and I wouldn't see the beauty in the world now if it wasn't for her and that gift.

I know you probably feel the same way about your son.

Thank you for this little remiinder today!
with love
Diana x

Hi Louise,

Considering that you only spent 30 minutes on this post, your writing is superb.

Moreover, stories of children accepting, overcoming or adapting to their disabilities are wonderful, but one must remember that for every 1 child who beats the odds and lives a normal life--earning a job, getting married, and having kids--there are a thousand who fail. Much of this has to do with the severity of ones disability and the education they recieve. In addition, I have learned that although most children with disabilities are extremely smart, college is physically much less demanding, and can yield great rewards, but we need to educate our children in math and science. For instance, I love writing, computers, and social media. However, without a grade 12 math and physics credit, I will be denied access to most college programs. Nonetheless, for those off to university, the work load is twice as much, as nothing less than a Masters Degree will do in today's day and age (this is 10 years and 60,000 dollars for the average person with a disability). Hence, when children are striving for continued social development, independence, employment, inclusion, and maintaining physical fitness or therapy, university is not always the best choice.

Now, with regards to the conference, and the reason for this posting, I can only quote your words:

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.

With this in mind, I ask, "Could greater participation in narrative medicine, family advocacy and social media better the lives of children, families, and healthcare professionals at Holland Bloorview?"

May we never stop turning disability into possibility.

Matt Kamaratakis

Thank you Diana for your beautiful message and sharing re Savannah!

You are so right. There is NO comparison. You simply can't compare two unique human beings. Each is infinitely precious and worth is not determined by what they "do."

And yes, I feel the same way that you do about having a different perspective and ability to "see" because of my son.

Hugs xo

Thanks Matt for your insights!

I went to a workshop this morning about the power of stories and I am keen when I get back to work on generating more stories from professionals about their experiences in this field.

We had a meeting with a smaller group today where personal stories were shared, and there were some strikingly beautiful stories told by professionals about why they got into the field, and their efforts to be "with" patients during traumatic times. We hear a lot from parents but we don't hear enough about what it's like to be on the other side.

Thank you Elizabeth!

This is the link to the organization you mentioned:

Please visit me on Motherelode if you have time!

Wow, what a great event! Thank you for an excellent summary Louise. I am glad to hear that the stories included a story about medical error. When things go wrong, full disclosure and apology are essential in the existence of and for the maintenance of a sincere culture of true FCC.

Don't feel sad, not everyone is successful disabled or not. I have a family member who is "typical" and still lives at home, doesn't pay rent and has no job or ambition and he's 21. As long as your life has joy in it, who can say it's not as priceless and precious as anyone else's?

Louise, I am so glad you were able to attend this conference and look forward to hearing more.

One thing about Sick Kids that always makes me chuckle is the amount of FCC literature put out but the lack of will/funding/training to put the rhetoric into action.