Why Patient and Family-Centered Care (PFCC) Matters

We talk a lot about birth plans in our birth classes, and we even have a course designed to help you make one. I meet with people individually to discuss birth plans and help them go through the process of making them. We do this for a lot of reasons, the main one being our strong belief in the value of patient and family-centered care.

Birth plans are just part of it. There’s a lot more to advocacy when you are pregnant and becoming a parent. At Breastfeeding Success, we work with individuals during pregnancy to help empower them with information and confidence so they feel good, have better pregnancy outcomes, and so they can be great parents and advocates for their children when they arrive. We strive to provide patient and family-centered care.

What is Family or Patient-Centered Care?

“Patient-centered care is a model for providing health care that focuses not only on the patient’s symptoms and medical history but also on the emotional, social, and financial factors that affect their life, as well as their values. It is often thought of as a partnership between a patient and a healthcare provider, in which the patient’s perspective is as important as that of the doctor or nurse.”

I might even go a little further and say that the patient’s perspective should take the most central role in their health care. This model of health care is not necessarily the standard everywhere.

I am certified by the International Childbirth Education Association (ICEA). Our educator training reinforces and prioritizes the values of patient-centered care. The ICEA endorses the concept of the “Circle of Care”. The person in the center of the circle is the pregnant person. They are surrounded by a circle of care that includes their medical care providers, allied health care providers, educators, community members, family members and friends.

You are, of course, the final decision maker when it comes to your health care. You have the final say, both legally and ethically. As an educator led by the Circle of Care concept, I also believe that YOU are the leading expert on you.

I might know a lot about the basics of childbirth and local hospital policies and procedures, but I don’t know very much about you. I ALWAYS assume that you know what’s best for you, as long as you have the information and support that you need. It is not my job to convince you that you should make certain choices in your pregnancy and birth. It is my job to encourage you to develop a vision for yourself, and then give you the tools you need to gather the information that can help you in your decision making.

That includes helping you gather a circle of care around you if you don’t have a complete one, and also to encourage you to communicate with the other parts of this circle. It is most beneficial to you when your entire care team can operate this way.

Origins of Patient-Centered Care

Carl Rogers was a U.S. psychologist who coined the term “patient-centered care” in the 1950s. He was describing the benefit of building a relationship of trust between therapist and patient.

Then U.S. psychiatrist, George Engel, developed the idea as a concept that could be used as an alternative to the traditional, paternalistic medical model that existed at the time. He called it the biopsychosocial model of health.

So it started with health care providers in the realm of mental health. That makes sense! They are trained to focus on a person’s emotional and social life. These ideas were later incorporated into practice by other medical care providers who were recognizing a need for better health care, and by systems that were seeing a drop in consumer satisfaction and trust in the health care systems.

What Patient-Centered Care Looks Like

I like to look at patient-centered care like this. Instead of hearing, “Here’s what you need to do.”, I would rather hear, “How can I help you?”.

This doesn’t mean that you have to know everything. You can communicate your ideas and preferences to your care team, then ask them for what you might need to know to make good decisions for yourself and for your family.

Your ideas and preferences should not be dismissed or discouraged. You should never feel like you need permission, or like you’re getting incomplete or incorrect information. If your provider responds in this way, it is your right to find a new provider. When you feel that your provider respects and trusts YOU, you will be more likely to trust them. When you trust your provider, the information and recommendations they share will feel more meaningful and safe.

Patient-centered care is evidence-based care. When you feel safe and heard and decision making is shared, health outcomes are better. It makes perfect sense. You are the expert in you. Your medical care provider is the expert in medical care. When you and your care providers combine your expertise, you can expect the highest quality care and best outcomes. It can and should be a collaboration… with you at the center.

What Family-Centered Care Looks Like

When you become a parent, you engage with the health care system even more. You continue to need health care, and now you also have a child who will need preventive care and might get sick or hurt. When this happens, your child becomes the center of care, but you also have to be there with them. You have to be their voice and their advocate, and you might also see yourself in the center of the Circle of Care with your child.

Family-centered care means that you are accepted as a full member of the health care team. Just like in patient-centered care, there is collaboration. The spirit is the same.

I had an experience recently with my son’s well-child checkup that illustrates this. He needed an athletics physical to play sports in high school, so we had to be sure to get that in before school started. Our regular family practice doctor (PCP) was on maternity leave, so we weren’t able to schedule his annual visit with her. She has been our family physician for several years. I see her for all of my well-woman care, and she also provides care for my kids. She knows us and has ALWAYS practiced patient and family-centered care. At each visit, she sits with my children individually and asks them about their daily habits and their overall health. She really wants to know.

She does this before she starts telling us what they should or shouldn’t be eating, or how much screen time they should be having. Most of the time, she just says, “You’re doing a great job! Keep up the good work.” She’s very encouraging of our good habits. She might occasionally make a recommendation after hearing their answers like, “It sounds like you get pretty good sleep most of the time, but you might want to be sure to get plenty of sleep on a school night, especially before a test.” And then she’ll give a little explanation of the importance of sleep.

I love the respectful care my kids get, and as the mother, I feel completely respected and integrated as a critical part of my kids’ care team. She trusts me, we trust her, and that’s why I always take her recommendations seriously.

The Difference a Provider Can Make

The doctor we saw for my son’s physical was very different. He spoke a lot and never listened. He interrupted and talked over us. He told us what we had to do without hearing about what we ALREADY do! My son eats better than most healthy adults, so he could have saved some time lecturing him about healthy eating habits. He didn’t ask or listen. He also told me I needed to catch him up on some vaccines. I knew they had been given, but for some reason weren’t showing up on his records. I told the doctor that, and he essentially accused me of lying. I knew those records existed.

When this happened with our regular PCP, she trusted that I was telling her the truth and jumped to the conclusion that there was an error in their system. She was right, and I felt respected. The second doctor did not give me the benefit of the doubt. I did again have to find the vaccine records from their previous pediatrician and sent them to him later the same day, but we won’t be going back to that doctor. That was not family-centered care. I was not treated respectfully. I was not given the benefit of the doubt. That was not collaborative care.

The Impact of Patient and Family-Centered Care

My situation with my teenage son was not the first time I have encountered disrespectful care as a parent. At one of my daughter’s checkups, she needed a couple of vaccines. She was about six months old. At all of our previous visits, I breastfed her during vaccines. It worked like magic! She never fussed at all.

At this visit, the nurse told me that wasn’t allowed to hold her for the vaccines, and we had to restrain her on the table. She kicked and fought and screamed like I had never heard her do. I wish I had advocated for her at that visit. I did it at the next appointment, and wouldn’t have taken no for an answer. Luckily, I never had another nurse contradict what I was doing. And I have unfortunately had other negative experiences navigating the health care system with and for my children.

What this did for me is create a barrier. If I have to see a provider that is not my trusted doctor, I go in feeling nervous and defensive. This is not a good environment for anyone. There are mostly excellent providers out there doing great work, but these barriers make it harder for them to do their jobs. For families, it makes it harder to reach out for help when they need it.

Another positive side effect of family-centered care is confidence. A parent who is trusted by their child’s care provider feels validated. They are hearing from an expert that they are doing a good job, that they are a good parent. This can lead to so many other positive side effects for the family. That child will have a parent who can advocate for them and make good decisions. That child has a parent AND a trusted healthcare provider on their side, because the parent will always be willing to seek advice from that provider.

Why We Practice It at Breastfeeding Success

At Breastfeeding Success, our goal is to be part of your Circle of Care. We are there for you. We can’t know what is best for you until you tell us. We provide regular staff training to reinforce the idea of family-centered care. We first want to hear from you about your goals and preferences. We understand the importance and benefits of breastfeeding, but we need to know more about you. We understand that you might have special circumstances that mean breastfeeding might not be the best solution for you. We see you holistically.

You are not just a lactating body. You have a history and a future. You have other people and situations in your life to think about. Our goal is to support you as a new parent, and be your partner in health care for your child.

References:

About Family-Centered Care – Article by Bright Futures, an initiative led by the American Academy of Pediatrics

Patient-centredness and consumerism in healthcare (Journal of the Royal Society of Medicine)

Patient- and Family- Centered Care Defined

Patient-Centered Care: Definition and Examples – School of Public Health

What Is Patient-Centered Care? | NEJM Catalyst