Preparing for a Child’s Hospital Discharge

When to begin setting up follow-up care?

Hospital discharge planning begins earlier than one may think. Typically, discharge planning begins when your child is ready to be transferred from the intensive care unit (ICU) to the inpatient floor/unit, depending on the hospital setting. Each day, the medical care team will think about what treatment, rehabilitation, and resources your child will need after leaving the hospital. Your child will likely have a different care team in the ICU versus on inpatient floors. However, the ICU team will communicate ongoing medical needs to the inpatient team. Knowing your child’s medical needs could empower you to effectively communicate with the medical care team, facilitate streamlining of discharge planning, and feel more prepared to deliver care after you leave the hospital. 

What follow-up needs will my child have?

The medical care team will assess your child’s medical needs and seek help from rehabilitation experts to determine how much support they will need after the hospital. Discharge planning and follow-up care should be personalized for the child. However, children commonly need follow-up for:

• • Physical symptoms (weakness, pain, deconditioning)
  • Neurological symptoms (seizures, movement disorders)
  • Cognitive symptoms (fatigue, communication, memory, multitasking)
  • Psychological or emotional symptoms (anxiety, depression, post-traumatic stress)
  • Social or spiritual symptoms (return to school or work, return to hobbies, “why” or “why me”)
  • Coordination of care (medication review, rehabilitation, assessment, or referral to additional specialists)

However, all of your child’s needs may not be known at the time of discharge. As your child enters their recovery journey after cardiac arrest, their needs may develop and change over time. If you notice changes in these areas, contact your healthcare provider to discuss options. Specialty follow-up or assessment may be helpful in understanding and providing optimal resources for your child’s ongoing needs.

Where will my child go after leaving the hospital?

Some children need skilled nursing care while others may benefit from either inpatient or outpatient rehabilitation. Possible discharge destinations include:

• • Skilled nursing facility or long-term acute care facility for the continuation of medical care such as intravenous medications, ventilator and/or tracheostomy care, and feeding tube management. These facilities are suitable for children who cannot remain awake long enough to meaningfully participate in rehabilitation or for children whose medical needs are too complex for a rehabilitation facility.
  • Acute inpatient rehabilitation at a specialized facility prior to going home from the hospital. Typically, there is a minimum requirement for three hours a day of rehabilitation and in more than one area of rehabilitation.
  • Home with or without a home health aide or visiting nurse who visits daily or a few times per week depending on the child’s medical needs, what is approved by insurance, and the availability of home nursing where you live. This may be an intermediate step before transitioning to outpatient rehabilitation 2-3 times a week.

What needs to happen before my child can be discharged?

Case managers are available to help with discharge planning, including finding appropriate skilled nursing facilities, long-term acute care facilities, and inpatient rehabilitation facilities. Case managers will work with your medical team to find an appropriate place to continue caring for your child. Pediatric facilities are not available in every state and available beds at these facilities may be limited. It is not uncommon for a child to remain in the hospital while awaiting placement. Case managers can help navigate placement and work with your insurance company. 

If your child is being discharged home, case managers will also help work with your insurance company,  home nursing agencies, and durable medical equipment companies to obtain what your child needs prior to leaving the hospital. Many hospitals have specific training and education requirements for parents/caregivers to complete before their child can be safely discharged home. Your training may include cardiopulmonary resuscitation (CPR) classes, completion of an overnight stay in the hospital if your child has new medicines or requires medical equipment for use at home and demonstration of ability to care for your child with new technology dependence. Examples of medical equipment that may be required at home include a tracheostomy, ventilator, feeding tube, or intravenous nutrition. If your child depends on life-saving technology such as a ventilator, your home will also be inspected to ensure that you have the electrical and environmental capacity to safely operate the ventilator.  Additionally, if your child qualifies for home nursing, it may take time to find a home nursing agency that can provide nurse staffing in your home, affecting when your child can be discharged.

Rehabilitation needs may be treated by physical therapists, occupational therapists, or speech-language pathologists. Collectively, coverage for treatments by these professionals may vary, so it may be beneficial to know ahead of time what coverage is available from your insurance so that treatment recommendations and priorities can be coordinated carefully.

Follow-up appointments

Regardless of discharge destination, your child will likely require many outpatient follow-up appointments after discharge. Where your child goes after discharge may determine when they will follow up with certain specialists. 

If your child goes straight home, they will need some appointments scheduled within 1-2 weeks. You or your child’s care team can begin to make some of these appointments before your child leaves the hospital. Other appointments, such as a neurocognitive follow-up, may be more appropriate months after hospital discharge. The primary care doctor may or may not be familiar with recovery and rehabilitation needs after cardiac arrest. If there is an ICU follow-up clinic or cardiac arrest follow-up clinic available for your child, this may be a good option to address many of the complex issues addressed here. Not many specialty clinics exist, however. Therefore, you need to be familiar with your child’s needs and reach out to your healthcare provider if you notice changes in their functioning. 

If your child goes to a skilled nursing facility or a long-term acute care facility, they will have to return to the hospital or clinic for follow-up appointments. The facility can coordinate transport for these appointments for your child. If your child goes to inpatient rehabilitation, you may need to schedule telehealth visits while they are hospitalized and in-person visits once they have returned home from inpatient rehabilitation. Later,  transitioning from inpatient rehabilitation, a skilled nursing facility, or long-term acute care to home also will require significant coordination of resources and information. You and any other family members/personal advocate should be involved in discharge planning conversations with doctors, care managers, and rehabilitation specialists.

Sources

Sawyer, K. N., Camp-Rogers, T. R., Kotini-Shah, P., Del Rios, M., Gossip, M. R., Moitra, V. K., Haywood, K. L., Dougherty, C. M., Lubitz, S. A., Rabinstein, A. A., Rittenberger, J. C., Callaway, C. W., Abella, B. S., Geocadin, R. G., & Kurz, M. C. (2020). Sudden cardiac arrest survivorship: A scientific statement from the American Heart Association. Circulation, 141(12), e654–e685. https://doi.org/10.1161/CIR.0000000000000747

Sobotka, S.A., Dholakia, A., Agrawal, R.K., Berry, J.G., Brenner, M., Graham, R.J., Goodman, D.M. (2019). Discharge practice for children with home mechanical ventilation across the United States: Key-informant perspectives. Annals of the American Thoracic Society, 17(11), 1424-1430. https://doi.org/10.1513/AnnalsATS.201912-875OC

Straka, N., França, U. L., Franks, J. D., & McManus, M. L. (2024). A national survey of pediatric post-acute care facilities. Pediatric Critical Care Medicine, 25(6), 493–498. https://doi.org/10.1097/PCC.0000000000003459

Thank you to our contributors

Neethi Pinto, Kelly Sawyer, & Jasmine Wylie