Want to bring the family into patient care? Look to pediatrics for a model

Your results should be improved satisfaction, lower costs, better outcomes

Often what works for adult medicine is distilled into practice for pediatric patients. But one area, pediatrics, has something to teach other branches of medicine: how to provide family-centered care. "It has its roots in pediatrics, but its principles apply across the board," says Beverly H. Johnson, president and chief executive officer of the Bethesda, MD-based Institute for Family-Centered Care. The institute is a nonprofit organization that promotes family-centered care and assists organizations interested in implementing its principles of collaboration and partnership between the patient, family, and caregiver.

For organizations that embrace family-centered care, there are many potential rewards, including improved patient and family satisfaction scores (see related story on how collaboration between patients and practitioners promotes patient satisfaction, p. 88), decreased length of stay, and less use of emergency departments. There are even ongoing studies that seem to suggest improved outcomes, too. For example, says Johnson, one Vermont group is doing a comparison of its 11 sites to see if outcomes are better at locations that use the principles of family-centered care.

"We work to help bring together health care consumers and professionals across all disciplines," explains Johnson. "If they can talk together about what works and what doesn’t, they can design a better health care system. Maybe we can work better, more cost-effectively, and we could have people leave the system — patients, families, and staff — feeling better about it if we did more of this."

The facilities that truly embrace family-centered care do more than simply ask patients and their families for input. They get the family and consumers of health care services involved in the planning of hospital programs and facilities, in the decision-making process, and in acting on the results of patient satisfaction surveys.

Among the organizations that have done so is the Dana Farber Cancer Institute in Boston. Through its Patient and Family Advisory Council, consumers have had a voice in issues as mundane as getting patient weights taken in private, and as complex as getting involved in the design of a new inpatient facility at Brigham and Women’s Hospital. In the latter instance, says public information officer Todd Ringler, patients and family members participated in move-planning committees, joined patient relations staff on daily rounds for two weeks after the move, and even escorted patients to the new unit on move-in day.

The advisory council includes four staff members and 12 consumers (for more on forming an advisory council, see article, p. 90). They sit on quality improvement committees, make up part of facility design task forces, and have even helped drive the creation of a task force on alternative medicine.

Most people believe that the technical care they get at a hospital is sophisticated, explains Pat Tommet, RN, PhD, CPNP, director of family-centered care at Children’s Hospitals and Clinics of Minneapolis/St. Paul. But what can make the difference to patients and their families are the kind of value-added touches that come with having truly patient and family-focused care.

Consumers are more knowledgeable

Family-centered care is something that Tommet thinks no organization will be able to do without in the future. "Right now, consumers are growing more knowledgeable about what they want from health care, and are less willing to tolerate the status quo" she says. "Most consumers of hospital services can’t measure the technical expertise of health care providers. But they can evaluate the care they received from a personal perspective. If their opinion is sought and they are treated as a partner and team member, they will feel respected. Most people respond favorably to good service and to family-centered care. That is a collaborative partnership."

In implementing the kinds of changes family-focused care demands, there are bound to be some obstacles, says Johnson. For instance, nurses were the ones who instituted visiting hours. But in family-centered care, the family is part of the team that makes a patient well. They are not visitors, but are welcomed at any time, day or night, whether there is a shift change under way or rounds going on.

Physicians, too, have to change the way they work. For instance, many prefer to do well-baby exams of new babies in the nursery, without parents present. It is faster for them due to fewer interruptions. But in family-centered care, Johnson says, they do those exams with the parents present. "It allows the doctor to model how to communicate with the baby and touch and hold the baby. But for some doctors, this is a huge change."

At many hospitals, staff members think they already operate a family-centered environment. But, says Johnson, "hospitals are often convinced by their own PR. They don’t really have family-centered care." Just getting them to accept this fact is hard. "And if you do, then you have to convince them this won’t take more of their time, but less. After all, people don’t sue for bad outcomes. The risk management literature says they sue because they have a bad relationship with their care provider — there was no respect, communication, or sharing of information. The flip side of that is what family-centered care is all about."

Tommet agrees that family-centered care is a journey, not a place, and that few hospitals have actually arrived there. "Many organizations do parent or patient satisfaction surveys," Tommet says. "Some even do focus groups. They see that as family input. But then they take that information to departments, units, or committees and let staff make the change happen. The next level in family-centered care is to make sure that patients and their families are involved in the design of the delivery of care, that they help effect the changes that the surveys indicate are needed. While doing a survey is better than nothing, it is still paternalistic, not collaborative."

There is a financial impact to bringing a family focus to your hospital — at least in the short run. For instance, if one aspect of your family focus is to build patient and family resource centers, there will be a cost to staffing them, to providing the kinds of information and modes of providing it — such as computer terminals with Internet hookups — that patients and families demand.

And there are staff costs to family-focused care. You have to find staff members who have experience in this kind of atmosphere, or you have to train them, says Johnson. And your continuing education has to focus on the principles of collaboration and teaming with the patient and family. But down the road, says Johnson, there will be savings — in time and money.

Find the right people

Should you decide to go forward, you should start by pulling together an informal work group of consumers to conduct a self-assessment (for more on assessing how family-centered your facility is, see box, p. 87). "Don’t just get a focus group together. Get a group that will work through the entire process," Johnson says. You’ll also want to have some staff members involved.

To find the people to be part of that initial group, Johnson suggests contacting departments that work with patients over and over again — such as oncology departments, for instance. They will likely have the names of patients or families who might be interested. To get its initial group together, Dana Farber sent a letter to every patient, asking if they might be interested in working with the hospital. More than 100 people showed up.

Once you know where you are, you simply have to integrate patients and their families into the committee structure at your hospital. And, says Johnson, if you are in the midst of planning a new unit or facility or renovating an existing one, "never ever, ever do it without getting input from patients and families. A lot of health care dollars are spent on facility design, and a lot of it is not a healing environment — it is intimidating."

The impacts that family-centered care can have may seem small to a large hospital, but they can be huge to patients and their families. For instance, at Children’s in St. Paul, one site didn’t carry extra-large-sized diapers. The family of one recurring patient, a 4-year-old with developmental problems, was always told the hospital did not have the diapers and the family would have to provide them. The mother went to the family advisory council who worked with the director of materials management to solve the problem. "It took some time, but this was a child who was hospitalized with some regularity," says Tommet. "And we are a children’s hospital, so you can assume that this was not the only family affected, but was the only family who came forward. Because the council is an organized group with an inside knowledge of our organization, they could make this happen. It seems simple, but for that family, and for other families, it was important."

"At the heart of family-focused care is respect for people and families," says Johnson. "It boils down to communication and relationships and involving families in decision making. It means that the family that wants a lot of information can get it, but one that doesn’t want it won’t be forced to take it. And if they change their minds later, they can."

"You can have all the medical information about Down syndrome," says Tommet, "but not every child with Down syndrome is the same. And you may know all about Down syndrome, but you don’t know all about a particular child with Down syndrome. The family knows more about their child. You have to respect that."