When you take your child to the doctor, or to the hospital, how much do you know about them? How much do you influence them? How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician? Have you helped create the design of the location, or the layout of the room? Have you influenced the way the providers interact with you?
How much influence do you want to have?
When Wendy was first sick, many years ago, we had no experience with doctors or hospitals. We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit. But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.) I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.
I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her. And I remember in this nice new facility that the television where we were watching the football game caught on fire.
All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.
This is the idea behind family centered care. The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person. And with the case of little kids, you’re not just treating the person, you’re treating the entire family. Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago. Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible. The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers. And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.
These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team. These have been life changing improvements.
But whet if we could do more?
What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?
I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children. First, I should tell you about the Family Advisory Council. The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators. Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.
One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program. The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids. The hospital ordered a bunch and the results have been overwhelmingly positive.
Here are some other things that the Family Advisory Council does:
- Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
- Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
- Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
- Review public health documents before they go out to the public, to make sure that they make sense, that they have met their goal of communication.
- Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
- Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
- Interview key new staff members who will interact with families, like nurse managers, etc.
- Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.
The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.
This has been an evolution, each step was challenging. Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no. Change has also been over a long period of time. I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that. Other parents on the FAC have similar stories. You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation. Sometimes, that means being abrasive or sitting through discomfort. A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level. It’s a partnership.
I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward. They’re having an international conference this summer in Baltimore Maryland. I’ll be there. If you come, please come by the poster session and say hi.
In a world where health care is already scary, its really great to minimize problems. Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance. Work through the resistance. Sit with the discomfort. Move forward together with trust. Become a partnership.