EXECUTIVE SUMMARY

There are unique tasks involved with caring for hospitalized children. The following are strategies to limit confusion and chaos during this especially stressful time:

  • establish a realistic care coordination plan;
  • provide a more seamless discharge experience for the family;
  • ensure that case managers work on the discharge process as soon as possible; that may include explaining to families that their children may not be “perfectly well” on discharge and suggesting services that exist outside of the hospital setting.

Caring for hospitalized children involves a unique look at creating plans of care and keeping the family calm and informed, experts say.

A report from the American Academy of Pediatrics, titled “Physician’s Role in Coordinating Care of Hospitalized Children,” delves into ongoing challenges across the varied facilities in which children are hospitalized, principles to improve the coordination of care, and trends among expectations and practice.1

Whether it is a scheduled admission or an emergency, the hospitalization of a child is extremely stressful for the family. Deciding at admission which physician to designate as the final decision-maker can limit confusion and chaos, establish a clear care plan, and provide for a more seamless experience for the family.

In more and more cases, there is a hospitalist service, notes report author Daniel Rauch, MD, FAAP, SFHM, professor of pediatrics at Tufts University School of Medicine and chief of pediatric hospital medicine at The Floating Hospital for Children at Tufts Medical Center in Boston.

“With the hospitalist, they’re the manager of the hospitalized patient and the subspecialist. Although they may have other people do consults, the hospitalist is the primary decision-maker,” he says. “It’s helpful for parents to know who is the one in charge. There’s times that a patient may get a surgical consult and the surgical team says they’re free to leave the hospital, but I may have to tell them the child is not leaving even though they don’t need surgery.”

The following are four specific ways nurse case managers can work with families during especially difficult hospitalizations:

• Watch for gaps among providers in unscheduled pediatric admissions.

Because the primary care physician may be unaware of the necessity for hospitalization, watch out for potential gaps in the patient’s care. When something happens that shakes up the family, it is critical that the care plan involve the patient’s primary care physician.

“The patient care comes first, but hopefully primary care physicians have been notified no matter when the child is admitted. It can be a struggle off hours, but from a patient’s point of view, there’s no difference between weekday and weekend,” says Rauch.

The American Academy of Pediatrics (AAP) urges hospitals to have the following mechanisms in place:

- Confirm that the inpatient physician makes direct contact with the primary care physician as soon as possible after admission to establish the foundation for communication that will continue until the discharge process, as “direct communication with the referring physician and primary care physician should not be overlooked because this will help provide a context of the child’s illness within the family, confirm current medication, and prevent unnecessary duplication of previous tests.”1

- Check with the emergency department physician “about all evaluations that have already been performed and any pending tests and to understand the need for hospitalization,” particularly because most unscheduled admissions are initiated in the ED.1

• Limit confusion for the family.

What happens when there is a disagreement among specialists? Should the family be involved in care meetings, or only when discussing treatment? Does the case manager attend these meetings and report back to the family?

Rauch says it is a fine line when including parents and patients in certain case discussions. That is where a nurse case manager can help to limit confusion for the family.

“It’s always better for the family to see a unified front. Even if you think you’re saying the same thing, slight nuances can create confusion for the family,” he says. “The more that communication can be limited — so the family is getting the same message — the better that is for families.”

“In difficult cases, case managers can be in one meeting with different specialists to hear their different points of view. Instead of telephone tag, or ‘he said, she said,’ they hear it directly. Then if the family has questions, the case managers can give direct quotes or go back for specific follow-up,” he adds.

But in cases where there is a discrepancy in the management plan, the family may benefit from being there to hear the pros and cons. During an already chaotic time for the family, this meeting may limit confusion if they can hear everyone’s opinions at the same time.

It also can be tough discussing things ahead of time with specialists, which often creates even more confusion for the family.

“I think a good amount of time it happens that you’re there doing a consult and parents ask, ‘What do you think?’ and you may not have the whole story there, at least yet. So it’s important to discuss with the rest of the team and share a collective plan first,” he says.

• Start the discharge process early on.

It has been said before that discharge planning begins on admission, and that is especially important for the pediatric population. While discharge is the obvious goal of the medical team, it is critical for case managers to carefully explain discharge parameters to the family at the time of admission.

The American Academy of Pediatrics says that anticipating discharge needs at the time of admission helps to get services during the hospitalization or to arrange for appropriate outpatient follow-up, such as social work, occupational therapy, and physical therapy.

If a child is admitted for something like bronchiolitis/viral pneumonia, there are clear parameters for discharge, specifically stable respiratory status and adequate oral intake.

But in more medically complex cases — for example, if a child is admitted for abdominal pain — the care plan is trickier. In situations like that, it is difficult even getting to the discharge plan because of a drastic change in the direction of care; in this case, the child either goes to the operating room or is allowed to eat.

“Hopefully at the end of the admission note, and on every subsequent note, it’s clear how the team is working toward the discharge goal,” says Rauch. “There is a goal from admission that you follow. As much as I may explain that to parents, it’s helpful having that repeated by other people.”

One of the most importance facets of discharge planning is working with families to schedule follow-up appointments as early as possible.

“It’s usually a fairly predictable course for children, and you know they’re going to have to see their primary doctor. Don’t wait until you’re writing the discharge papers; instead, make that appointment immediately,” he says.

“More and more studies have shown better results when families are discharged with an appointment in hand,” he adds. “The challenge is usually not on the hospital end; it’s making appointments after hours and weekends. If there’s some way to anticipate those post-discharge services so you make the appointment before discharge, or have some really secure way to get back in touch with them and call, the child would be better off.”

• Teach families about post-discharge realities.

It is important that case managers ensure that families really understand what is going on with their child. While the general standard is using AAP tip sheets and discharge instructions, families also may benefit from individualized discharge instructions. This may mean giving the families a list of websites for more information or links to relevant online videos.

But it often is more detailed than that. That’s why it is important for case managers to start the process early on; doing so will help families understand that their child may not be “perfectly well” on discharge. Will their child be in pain? What do parents have to watch out for? What will that mean for the next day, or next week? What medications does the child need immediately? What options outside of the hospital setting exist for the families?

This education piece may also reduce 30-day readmissions, as direct, clear discharge instructions are proven measures for improved health outcomes.

For example, a study published in the Journal of Child Health Care2 noted that families that go home ill-prepared experience high levels of worry. The study noted that healthcare professionals should tailor postoperative recovery information, including assessment and management of pain, and that “information should be made available that describes the experience of other families who have undergone a similar surgery, and families should be made aware of what information they need and how to access it before and after discharge.”

Indeed, Rauch points out that parents often are eager to get their child home, but that there are caveats.

“We have to observe how they are breathing and eating, for example, and they may not be able to return home and be immediately back to normal,” he says.

Rauch recommends that case managers start working with parents immediately so they are prepared for post-discharge realities.

“If the case manager anticipates that the child will have ongoing needs, a parent may need to understand they’ll have to take time off from work. Or if the child can’t get up and down stairs in their home, how can the case managers support the family in finding an alternative place to stay for a few weeks?”

The sooner they know that, the better, he adds.

REFERENCES

1. Rauch DA. Physician’s Role in Coordinating Care of Hospitalized Children. Pediatrics Jul 2018, e20181503; DOI: 10.1542/peds.2018-1503.

2. Ford K, Courtney-Pratt H, Fitzgerald M. Post-discharge experiences of children and their families following children’s surgery. J Child Health Care. 2012 Dec;16(4):320-30. doi: 10.1177/1367493512448129. Epub 2012 Oct 31.