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Establishing patient- and family-centered care in a non-academic pediatric intensive care unit.

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Learn how proper implementation of patient- and family-centered care can improve the safety, quality, and patient satisfaction associated with the delivery of hospital-based care.

Hospitals and health care providers are being asked both by consumers and the federal government to be more transparent today than ever before. Patient safety and satisfaction have become paramount. The health care landscape in the United States is constantly evolving, and hospitals and health care providers must change along with it.

Regulatory and oversight issues, not to mention the daily struggles of patient care, human resource issues, and reimbursement for services, can overwhelm and demoralize the physician and administrator. Physicians are under scrutiny, not only with respect to the quality of care that they provide, but also in the way in which they interact with patients and their families.

That brings us to the issue of patient- and family-centered care. What is it? Why should physicians practice it? Why should hospitals encourage it?


The patient- and family-centered care movement began in the early 1990s in the United States when the Institute for Family-Centered Care was in its infancy. At that time, the Institute was mainly focused on increasing the involvement of children in their own health care decision-making.

Family-centered care was thought of as a pediatric entity. Over time, however, ideas have changed, and it has been recognized that patients, regardless of age, and their families needed to be involved in their own health care decision-making.

Patient- and family-centered care is based upon four principles:

1. Health care providers must listen to and respect the decisions of patients and their families, attempting to incorporate their values and beliefs into the rendering of care.

2. Providers must communicate with patients and their families in a clear, timely, and unbiased fashion.

3. Patients and families are then encouraged to participate in care and decision-making to the extent that they choose.

4. Patients and families then collaborate with health care entities and providers to develop and evaluate programs, physical plant structure, and professional education.

Laying the foundation

I am a practicing pediatric intensive care physician in a children's hospital within a large community hospital. Our group of critical care physicians is a contract private practice within that entity. There are no competing intensive care groups providing care in our unit.

Although we teach residents and other allied health profession students, we are not an academic institution. We care for approximately 1,700 critically ill and injured children annually in a 28-bed unit. We were approached several years ago to develop a clinical best practice for patient- and family-centered care in our pediatric ICU.

As a group, we were fortunate to have clinical and physical plant infrastructure in place that allowed us to develop this practice. A director of family-centered care was already employed by the health care system.

A physician "champion" of family-centered care was also employed by the hospital system. Both provided our clinicians with the encouragement necessary to accomplish this goal. The encouragement was in the form of persistence and a positive attitude, convincing the physicians in our group that this was the right thing to do for the patients and their families.

A youth and family advisory council was already in place within the hospital system to provide feedback regarding how well patient- and family-centered care was being implemented. While our intensive care group is a private contract group with the hospital, it has a vested interest in maintaining a good relationship with the hospital.

So, the hospital did have some leverage in achieving its intended goals. In situations where physicians are employed by the hospital, it may be easier for administration to create directives. Obtaining physician buy-in is still essential to success. So, creating physician champions and leaders may have a greater chance of resulting in organizational success rather than issuing an edict.

As far as physical plant is concerned, our hospital is fortunate to have a place where families who live far away can stay across the street from the hospital in a 4,000-square-foot family center free of charge, so as to not be separated from their child.

Also, the majority of our ICU rooms are single-patient rooms with adequate space for a parent to sleep at the bedside. We allow parental presence at the bedside 24 hours a day without restriction. We do attempt to limit the number of visitors in the room at any one time in order to allow the health care providers access to the patient and so as not to disrupt care.

We also request that non-parent visitors depart after 9 pm so that the patient is able to rest, although we encourage a parent (or other designee) to stay if they so choose.

Other offerings for the families within the hospital itself include free lunch, a teen room, family relaxation area, areas to shower and change, on-site school with a full-time teacher provided by the county school district so that hospitalized children can participate in the homebound school program, a child-life program, laundry room, and a playground.

All of these are important components of providing patient- and family-centered care, but the principle intervention that we as clinicians embarked upon was family presence on rounds.

The process

Family presence on rounds is something that many pediatric hospitals, in particular academic ones, have been allowing since the late 1990s.

The art of rounding with patients and family members has been an area of research that has led many institutions to develop educational programs for attending faculty physicians, residents, and nursing staff, in order to optimize the experience for both the families and the health care team.

Those principles are beyond the scope of this article, but resources exist to aid hospitals and providers who are contemplating rounding with patients and families to conduct this in a meaningful way.

We cultivated our own process for doing this because we are not a traditional academic model pediatric ICU. Our attending level physicians provide in-house coverage 24 hours a day. We, as opposed to residents or fellows, are communicating directly to patients and families.

We conduct multi-disciplinary bedside rounds every morning at a preset time with the physicians, physician assistants, nurses, respiratory therapists, pharmacists, social workers, case management workers, and any residents or students that may be present.

Incidentally, we performed bedside multi-disciplinary rounds before family-centered care, and this made the transition to inviting families easier for us than starting from scratch. Now, we proceed to each bedside and invite the family members to participate in rounds if they so choose.

Some parents desire to do so, and some do not. We respect their individual choice. We preserve patient and family privacy by closing doors to adjacent rooms and having families of other patients go into their own room or leave the general area when we are rounding on a child other than their own. We encourage the parents to participate and address them directly in our rounds.

However, we try to limit the length of discussions on rounds because we do return afterward to examine each patient, providing further updates to the families as needed. We have not found that rounds take longer with family members present than they did previously.

We round on 22 to 28 ICU patients in 60 to 90 minutes on average. In some instances, it may even save time and improve patient and family satisfaction. The parents can be updated early in the day and know the plan of care.

Although we try to speak in plain, understandable language, sometimes we lapse into medical jargon and clarify this later or the nurses will clarify after rounds. For the most part, we have found that families are satisfied, and our patient satisfaction scores consistently above the 90th percentile reflect this.

Tools for success

One of the tools that aided in the effectiveness of process was the creation of a brochure that families receive when their child is admitted to the Pediatric Intensive Care Unit. This brochure explains what patient- and family-centered rounds are, and what some of the expectations are for parents and patients during these rounds.

We encourage them to participate and ask some questions, but request that parents refrain from using that time to have long discussions or ask a multitude of questions so that we can get through the work of the day and attend to all of the patients.

We reinforce that we will come back individually to them later to address all of their concerns. A second tool that has fostered the success of this process is the orientation to patient- and family-centered rounds provided to the parents by the admitting nurse.

Avoiding pitfalls

There are a number of potential setbacks that an institution or physician leader could face after a decision is made to pursue patient- and family-centered rounds at their institution.

One major reason for failure of this process is lack of buy-in on the part of the participating doctors. If the physician leader or administration of a hospital has not garnered buy-in and support from the doctors who will be responsible for conducting rounds, then this process will not likely succeed.

Family-centered rounds performed poorly could actually lead to greater patient and family dissatisfaction. Health care providers who try to conduct these types of rounds without knowing the patients' names and medical conditions, who are devoid of compassion, and who do not actively address and involve the patients and their families, run the risk of creating a perception of poor quality care. So, a level of commitment is required from those who will be leading and participating in these rounds.

Another reason that the process could falter is through failure to involve nursing staff and leadership, who are an integral part of this process, in planning of patient- and family-centered rounds. Other members of the health care team should be educated and their support sought as well. Without their cooperation again the process will likely fail.

A third reason that this might fail is lack of an identified leader of rounds. This will most likely be the physician, but perhaps not always. If someone is not responsible and accountable for rounds, then the process will not run smoothly.

A fourth reason for failure is lack of planning and lack of education of the health care providers on how to conduct rounds with patients and families present. As mentioned previously, there are resources available to providers on how to conduct rounds with patient and family presence (see resources).

Finally, physicians often fear that parents who see physicians disagree or have a discussion about the best way to approach a problem will view the doctors as incompetent.

We have found in general that parents value seeing a discussion taking place as to the best approach for their child. We even explain to the parents that the discussion is beneficial in order that we ultimately come to a consensus as to the best treatment plan.






By Jason Adler, MD, MBA, FAAP, CPE

Jason Adler MD. MBA, FAAP, CPE

Medical Director, Pediatric Intensive Care Unit, Joe DiMaggio Children's Hospital

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Title Annotation:Patient Care
Author:Adler, Jason
Publication:Physician Executive
Geographic Code:1USA
Date:Sep 1, 2009
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