Preparing a child with medical complexity and their family for care at home is a special process, one that requires leadership, knowledge and skills. Of utmost priority for the child and family is the safety and effectiveness of care at home and the sustainability of this care over time. Each child and family is unique. Some families will rapidly acquire knowledge and skills whereas others may be challenged by strong emotions or other factors that delay their journey towards empowerment. While some healthcare teams may be involved in discharge planning on a regular basis (and thus have the opportunity to gain experience and skill), other teams may have infrequent discharges because of regional variations in patient volumes. If you are new to discharge planning, you may wish to also review Prepare yourself and Prepare your child for further detailed information. The content here is intended as a practical guide; do not hesitate to contact us for more information or if you have suggestions or questions.

Discharge planning requires a leader who coordinates the process, in close collaboration with the child, family and the healthcare teams. This coordinator is often a trained nurse or social worker, depending upon your region. In Canada, there are several established special interest groups dedicated to the care of children with medical complexity (for example, within the Canadian Pediatric Society and the Canadian Association of Pediatric Health Centres (CAPHC)), contact us if you would like more information on these groups which can be a useful source of support in the comprehensive care of the child with medical complexity.

The basic principles of discharge planning for a child with complex care needs at home are:

A. Start early 

B. Engage the family from the beginning

C. Involve community partners early in discharge planning

D. Use an explicit framework to guide the discharge process

 


A. Start early!

Transitioning a child with medical complexity from hospital to home is a detailed process. Planning ideally starts at the time of the hospital admission, well before the child is medically stable. Often, care for this group of children starts in a neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU). While the specific care needs of the child may not be completely known, it is never too early to engage parents in the care of their child, even if this is not the usual perspective in the intensive care unit setting. Ideally, there is shared care and communication between the discharge planning team and the intensive care unit team such that their complementary skills best serve the short, medium and long term needs of the child and family. Early coaching by a healthcare professional skilled in discharge planning may help families cope with acute stress and move towards empowerment.


B. Engage the family from the beginning

Engaging the family in the care of the child from the beginning enables them to:

  • Bond and connect with their child.
  • Foster their child’s global development and happiness.
  • Develop expertise and comfort in providing the child’s daily care.
  • Become attuned to their child’s daily variations in physical and emotional stability such that they become skilled at perceiving when their child is not in a stable, healthy state.
  • Develop a sense of self-empowerment and to see themselves as key members of the child’s healthcare team.
  • Accept their child’s healthcare needs, with or without a specific medical diagnosis.
  • Become more effective advocates for their child and for their family.
  • Reflect on how they will be able to provide care to their child at home.
  • Consider how they will organize their child’s care.
  • Consider how they will organize their day, taking into account other family members.
  • Estimate, with the help of the discharge planning team, what type and how much assistance will be required at home.


C. Involve community partners early in discharge planning

Some children require a level of care that parents alone cannot meet without support in the home. As soon as the child’s and family’s medium and longer term care needs are generally known, involve community providers in discharge planning, forming a cohesive team to facilitate the eventual transition in care. This also allows the community partners to get to know the child and family, building a trusting relationship that will ultimately optimize care at home. It is important for families to see the collaboration between the hospital and community teams and for these teams to provide common, consistent care messages to families. This, of course, was a guiding principle in the development of the evidence-informed, standardized care practices described on this website. Minimizing variability in care recommendations, at least at a regional level, optimizes quality and reduces unnecessary parental stress.

Depending upon regionally mandated responsibilities, the discharge planning leader should recruit and train and/or verify the skillset of designated home caregivers. With the family and community partners, jointly establish a discharge date. Coordinate the transition to home with the implementation of homecare services. Discuss and develop strategies for potential transfer of care back into the hospital, either for scheduled or urgent care.


D. Use an explicit framework to guide the discharge process

There are usually many different healthcare providers, in hospital and in the community, involved in the care of a child with medical complexity; overall planning for care at home is at risk of being chaotic and/or fragmented. Without a standardized process, discharge needs may be sub-optimally addressed. For an effective transition to care at home, there needs to be:

  • Partnership with the parents or designated caregivers, hospital and community providers.
  • Collaborative consensus on the specific and global care goals for the child.
  • A discharge coordinator (one or more leaders who coordinate the actual implementation of the plan, monitor and document progress, etc).
  • A written discharge plan that is regularly reviewed, revised and updated, in collaboration with the family and the healthcare team.
  • An explicit framework to guide the discharge planning process (one example shown below). Find a printable summary here.

 


FRAMEWORK TO GUIDE THE DISCHARGE PLANNING PROCESS FOR A CHILD WITH COMPLEX MEDICAL NEEDS 

Step 1. Involve the child’s family and care team early on

Step 2. Specify discharge criteria for the child to safely leave the hospital 

Step 3. Make discharge care plans addressing issues that may affect the health and safety of the child

Step 4. Finalize discharge

Step 5. Prepare for follow-up visits (scheduled and acute)



Framework to guide the discharge planning for a child with complex medical needs

Step 1. Involve the child’s family and care team early on – as soon as it is apparent that there will be ongoing care needs (even if they are not completely specified)   

Questions to consider:

  • Does the family want to care for the child at home? (If not, why not?)
  • Is the family willing and available to learn the care?


Determine the family’s willingness to care for their child at home

As soon as it is known that the child will require medium to long term complex care, a discussion should take place to determine the family’s desire to provide the care at home. In Canada, families are expected to become experts in the care of their child and to provide a substantial portion of the child’s daily care needs; the amount of homecare support varies by region. When families indicate that they do not wish to learn their child’s care, do not agree to actively participate in or provide a significant portion of their child’s daily care, then the healthcare team should explore these issues carefully and without delay. Many families are hesitant at first and are still dealing with the shock of learning that their child has complex care needs. As families are coached towards empowerment, the discharge coordinator can help families envision how they will safely care for their child and manage the needs of other family members. It may help early on for families to meet others who are providing similar care. Show and guide parents through the Prepare your child and Prepare yourself sections of this website where many practical strategies for empowerment may be found. Help families start to organize themselves, starting with organizing their paperwork.

As healthcare providers, we often feel like “protecting families” by delaying these types of discussions until the child is more stable; our experiences have taught us that this delays parental empowerment and prolongs the hospital stay. While the specific care required at home may not be known, families can start participating in many aspects of their child’s daily care, even in an intensive care unit setting, for example, starting with bathing, playing, and learning how to feed their child.

With regard to knowledge and skills, parents must learn all aspects of their child’s care (including complex therapies, like the ones shown in the care practices). To safely provide care at home, parents need to be prepared to identify and respond to changes in their child’s condition promptly and to communicate this with the healthcare team. Ideally, the global care of the child is provided in the format of a “medical home” (contact us to learn more about this). Reassure families that they will be supported through this transformational process.

Explicitly clarify roles and responsibilities of the parents and the educators involved in the discharge process. Provide parents with educational goals; use the “Learning objectives” which are included with each category of care to get started. Track progress and encourage families to ask questions along the way. The best way for families to become experts in their child and in their child’s care is to spend as much time as possible with the child and to participate actively in the daily care.

Identify key team members of the healthcare team (in-hospital and in-community) involved in the care of the child

Organize a multidisciplinary meeting with the family and key members of the healthcare team to:

  • Discuss discharge goals (eg, medical stability, family competency),
  • Identify potential barriers to discharge,
  • Discuss care/management plans for main issues,
  • Identify issues/items to be addressed prior to discharge,
  • Set tentative discharge date,
  • Create task list.


Step 2. Specify discharge criteria for the child to safely leave the hospital

As a child with medical complexity transitions from the hospital to home, safety and sustainability of care at home are prime concerns. Discharge criteria are a way to define what “safe” and “sustainable” care look like for a specific child. While there may be variations based upon a child’s medical condition, many of these traditional limits to discharge are constantly evolving as our ability to facilitate homecare for even the sickest children evolves. For example, a few years ago, it would have been unthinkable to have a child in severe heart failure go home on a continual inotrope infusion while awaiting a heart transplant. Nonetheless, the basic questions to consider in contemplating care at home remain unchanged. A printable sample framework for discharge is found below.

Child’s medical stability

Questions to consider:

  • Is the child medically stable?
  • What are the discharge goals?

Most children with medical complexity are also FRAGILE, that is, the child can be expected to have variations in their health, both predictably and unpredictably. If this degree of fragility is changing on a daily basis and involving marked changes in the care required, then the child may not be suitable for care at home. Nonetheless, even before a child has a reasonable period of stability, the healthcare team can begin to identify the child’s healthcare needs, including the need for specialized equipment (discussed in more detail below) at home. It can be valuable to reflect on the child’s patterns of variability, to start to identify risk factors and the early signs of a change in baseline health. Parents are often very perceptive in identifying the earliest signs of a change in their child; listen to their observations. In addition to clarifying the health issues and determining explicit discharge criteria (safety and stability criteria for home), start to consider, with the family, how much help they will require at home to provide the needed care (see below, Community resources). Depending on region, obtaining equipment, funding and/or personnel for homecare support may take a considerable length of time.

Unless a child has a clear plan for palliative care, the child should be medically stable at the time of discharge with predictable daily care needs. There should be no major changes in daily care for at least several days before discharge. The child must also tolerate an adequate amount of hydration, nutrition and be able to take medications as prescribed. Of course, the child should be comfortable, in no acute distress and be at their baseline health as defined by the criteria of medical stability for the child.

Consider the remaining discharge criteria as areas for particular focus in the transition of care to the home. It is valuable to have the input of healthcare professionals who are familiar with the differences between care at home and care in the hospital; home is definitely not the hospital! Many of these issues take considerable time to resolve; by starting the discharge process early, solutions can be found without unnecessarily prolonging the hospital stay.

Caregiver’s skills and competencies in the care

Questions to consider:

  • Can the family provide the child’s care?
  • Can the family demonstrate:
    • Competency in care?
    • Proper use of assistive technology?
    • Recognize changes in their child’s general state and take the appropriate actions?
  • Does the caregiver know their child’s medications and why they are prescribed?
  • Does the caregiver know how and when to administer medication?
  • Did the family complete an independent 24-48 hours over-night stay prior to discharge during which they were responsible for all aspects of their child’s care?
  • Did the family have trial passes outside the hospital and at home?
  • Are there language barriers?
  • What is the literacy level of the main caregivers?

Parents, or the designated family caregiver, will need to be trained in all aspects of the child’s care; that is:

become familiar with the daily variation in their child’s health;
recognize and respond appropriately to changes in their child’s general state; and,
trouble-shoot technology-related problems.

Before discharge, parents must demonstrate competency in the care and use of assistive devices including monitoring devices, if applicable. We recommend that at least two caregivers from each family are fully trained to provide all aspects of the child’s care prior to transition home.

Depending upon the child’s complexity, we recommended that the family practice all aspects of care (and the organization of the day) with a 24-48 hour overnight in-hospital stay. This is valuable in finalizing care for home; it is another opportunity to answer questions and solve problems. Provide families with opportunities to do trial visits home, during the day and overnight–this experience is important and provides families insight on the reality of managing care at home while managing other competing family commitments. For the child who has had a prolonged hospitalization, this is also important in the adjustment to a new care environment. It is not uncommon for children to express their stress with transition through behavioral changes. See the section “Prepare your child” for a variety of tips on helping children adjust to life at home. It is also helpful for the family to talk to other families who are in a similar situation to allow them to get as much information as possible to prepare them for the reality of care at home.

Most parents have little or no pre-existing knowledge or skills about medical and nursing care. For some, they have become parents for the first time and may not be familiar with the usual skills required to parent a healthy child. As families learn the care required to support their child safely and effectively at home, they will benefit from consistent teachers (usually nurses and other allied healthcare professionals) who can guide them through this complex learning in a collaborative and organized manner and carefully assess progress over time. Parents build a bond with their “teachers” and it is through that trusting relationship that they will build confidence and empowerment. Some parents may be limited in their ability to communicate (for example, deafness or low literacy skills) or their understanding of either French or English. It is important to be aware of these challenges early on in the discharge process so that solutions can be found to ensure safe care at home.

The reality in many healthcare settings is that there are many “teachers” in many locations; be careful to coordinate teaching so that there is as little fragmentation as possible. Ensure that the content and methods of care are taught consistently between different teachers. (That is one of the main reasons that the standardized, evidence-informed care practices found on this website were developed.) Inconsistency, especially when unnecessary, can be anxiety provoking for learners, especially in the high-stakes learning of care for a child with medical complexity. Families tell us that they want to know what they have to learn and how much time it will take to learn. Families learn at their own pace. Encourage and support them in their learning progress as they become increasingly comfortable, confident and expert in their child’s care. Use the “Learning objectives” with each category of care to set the stage for learning. Keep in mind the learning style of the family, for example, are they more visual, auditory, do they prefer written materials etc.

We recommend printing out the care practice for learners, so that they and you can add in notes as you teach the steps of care. Hands-on demonstrations and parental practice are essential to learning the care practices. Contact us if you wish further information on the teaching methods.

Equipment and supplies

Questions to consider:

  • What equipment and supplies are needed to provide the care at home?
  • How will equipment be obtained?
  • How will equipment costs be covered?
  • How and when to order supplies?
  • Who should be contacted in case of equipment failure?

Once the care needs are known, determine what equipment and medical supplies will be required to provide the care in the home. Parents should be given opportunities to practice the care using the home equipment in-hospital before discharge. At the time of discharge, all the medical equipment and supplies must be in the home readily available and fully operational. Review with the family how to order supplies needed as well as how to contact the suppliers in the event of equipment breakdown or malfunction. Make plans with the family so that the child’s care will not be interrupted in the event of a power outage. Encourage the family to add information on equipment and supplies to their child’s care organizer.

Medications

Questions to consider:

  • Has the prescriber ordered the medications in as simplified a form as is safely possible (6 mg vs 6.15 mg for example) or specified the dilutions so that the doses are easily measurable? (Do this with a pharmacist to ensure medication stability at recommended concentrations.)
  • Is medication administration timed in a way that matches the child and family’s usual routines? Is sleep disrupted as little as possible by medication administration?
  • Where will the medications be filled? Does the family know how to refill prescriptions?
  • Were the medications reviewed before discharge? Have unnecessary or ineffective medications been discontinued?
  • Is the parent able to administer the medications accurately and reliably?
  • Does the child take the medications reliably?
  • Where will the medications be stored at home?
  • Do the parents know the names, doses and indication for each medication that the child requires?
  • Does the parent have a written list of medications that is readily accessible (for example, in the care organizer, a photo of the list on a cellphone, etc)?

Recommend that families fill all of their child’s prescriptions in one community pharmacy, as much as possible, to avoid medications errors. Medications should be available in the home and reviewed before discharge. Talk to parents about the risks of polypharmacy and the elevated risks for medical errors, especially during transitions in care, such as a hospital readmission. Teach parents to keep an up-to-date list of medications (with exact medication names and dosages) readily available, in the care organizer and also on their cellphone. Inform parents that formulation differences are common between the hospital and community pharmacies, this is especially important when medications are provided in the liquid form.

In the home setting, reduce the risk of medication administration errors by showing parents how to make a daily/weekly medication schedule for their child and encouraging them to check/initial each time they give their child a medication. Life gets very busy at home and it is easy to forget or duplicate medications in error, especially when you are chronically tired. Dosettes, pre-packaged medications prepared by pharmacies, are helpful when the child is taking medications mainly in pill form and when medication changes are infrequent. Encourage families to establish good communication with their local pharmacist who can join in the effort to optimize the safety of care at home. See recommendations for parents on medication safety here.

Medication safety at home also includes safe storage. As much as possible, medications should be kept in a locked, secure cabinet. If the medications require refrigeration, consider the purchase of a separate, lockable container or mini-refrigerator.

If the child requires nutritional supplements (enteral or intravenous), ensure that there is an appropriate supply available. Many nutritional supplements are costly; verify that the family is able to obtain the supplies. In many regions, there are financial programs available to support families. Address these issues in advance.

A home visit by the healthcare team can be invaluable in helping families organize their child’s equipment, supplies and medications in a safe manner at home.

Home environment

Questions to consider:

  • Is the care environment safe, accessible and adequate to meet the care needs of the child?
  • What adaptations or adaptive equipment are needed in the home to facilitate access, care and safe handling of the child in the home?
  • Will the family have to move?
  • Does the family have access to a functional telephone?

The home environment must be accessible for the child and adequate to provide care safely. Review the section on preparing for care at home with families. Discuss where medications and supplies will be stored and where equipment will be placed in the home. Determine if the home environment can accommodate the equipment while respecting safety regulations, such as sufficient electricity outlets, fire extinguisher; functional fire detector etc. Ensure the family has access to a functional telephone to communicate with the care team at all times. Review the section on home safety with families prior to discharge.

If the environment is not adequate for the care of the child, adaptations will have to be completed before discharge. Consult an occupational therapist (or in some regions, a physiotherapist) to assess the home environment. Start early as this can be a lengthy process for even the simplest of adaptations. In many places, the process of home adaptation is complicated by the number of agencies involved in evaluation, funding and implementation of the adaptation. Coach families through this process so that they can concentrate their energies on the care of their child and family. If the home environment cannot be satisfactorily adapted, families may need to find a more suitable place to live.

The family should inform authorities, such as insurance companies, electricity and utility providers, local fire station, ambulance/emergency medical services etc, of the child’s care needs and type of equipment in the home, eg, oxygen cylinders, ventilator. This is especially for children on life-sustaining therapies to be prioritized, as much as possible, in emergency situations such as power failures or natural disasters.

Social resources

Questions to consider:

  • What are the family’s emotional, cultural, religious or extended family and social supports?

An evaluation of the family’s psychosocial history is the best way to start the discharge process. Getting to know the family, their experiences, strengths and challenges, through respectful inquiry, is a natural way to build trust and foster a collaborative relationship. Identify existing emotional and social supports and discuss with families how this might be optimized. A home visit can be transformational in connecting with families and to quickly identify challenges and potential solutions.

There is a plethora of blogs and websites written by parents of children with medical complexity for other parents (see Links of interest), all with the common message that caring for a child with special needs is a unique, chronic stress of substantial magnitude for families. We provide some tips for families here. Exhaustion, anxiety and depression are not uncommon amongst caregivers; while prevention is always preferred, realistically this not always possible. Be aware of signs of stress in children and their families and be prepared to respond to their needs over time.

Community resources

Questions to consider:

  • Does the child have a family physician/pediatrician in the community?
  • Does the family have access to respite services?
  • Does the family need professional support in the home (type and number of hours/week)? When will home services begin?

As part of an effective discharge process, there should be a clear description of the child’s care needs, along with an assessment as to how much time care takes, on a daily basis. In some situations, it is important to consider that more than one caregiver is required to safely provide the care (for example, central line access in a wiggling toddler). In addition, some children, with life-threatening fragility, may require 24/7 surveillance so that critical situations can be rapidly identified and corrected. Once there is a detailed description of the care and number of caregivers required then it is important to explore with the family and community care provides how the care can be provided at home. Resources vary between region, specific information for families living in Quebec can be found here.

If this is a family’s first child with medical complexity, they may not realize how different care at home is compared to care in the hospital. Although trial home visits are effective in identifying many issues, they rarely are long enough to portray the true home experience – families often have a “honeymoon” of easier coping with transition home before the reality of fatigue from repetitive care and suboptimal sleep sets in. (Nonetheless, almost all families express delight and gratitude in the ability to care for their child at home, in their own communities.)

To determine the child and family’s support needs, it is important to explore with the family their level of competence and confidence in the child’s care and how they will be able to manage their child’s care alongside other family commitments, including the care of other children or other family members.

Inform families of the different resources in the community to support them in their caregiver role, including respite services. The skills and knowledge of an experienced social worker can be invaluable in supporting families.

Some children have very complex care needs or require high intensity care at home that parents alone cannot meet without professional support at home. As soon as the clinical and technological needs of the child are known, plan the transition to care at home in conjunction with community health partners. Discharge planning meetings should be organized between the family, hospital team, and the community team to identify the needs and professional supports required. Together, identify a specific discharge date. Like most of the aspects of discharge planning, identifying and implementing community services can be a lengthy process; start early!

For more information on the assessment of care needs and specific recommendations for children living in the province of Quebec, see here.

Financial resources

Questions to consider:

  • Does the parent have to stop working to care for the child at home?
  • What financial assistance is available? Have applications for provincial and federal subsidies been completed and submitted?

Taking care of a child with complex medical needs at home has a financial impact on the family. In many situations, at least one parent must stop working to take care of their child at home, especially when the child is young and not eligible for specialized care in a school setting. In addition to a loss of family income, parents often have to pay for expenses not covered by their insurance plan or government programs. Inform families of the different financial programs available and assist, when necessary, in applying for financial assistance. In the province of Quebec, see financial assistance resources here. Here too, the services of an experienced social worker can be beneficial.

Transportation

Questions to consider:

  • Does the family have appropriate transportation?
  • Was the medical stability of the child in the car evaluated? Will the child require an adapted car seat?
  • Does the family car need to be adapted to facilitate access and safe transportation of the child and equipment? Will the child require adapted transportation, specialized taxi or transportation services?
  • Does the child need someone other than the driver in the car during transportation?
  • How will the child safely move between locations?

Depending upon the care needs of the child and the distance to be travelled, this may be quite complex, involving equipment, battery (power) back-ups and extra personnel. Consider both elective transportation (such as coming for a scheduled healthcare visit, visiting relatives or going to school) and urgent transportation needs. Assess the medical stability of the child during transportation including an evaluation of: accessibility of the child and equipment in the car; safe handling of the child and safe storage of the equipment during transport. Adaptations may be required to the car seat and/or the family vehicle. If the family does not have a car, a transport plan must be established for well visits, eg, adaptive transportation, specialized taxi or transportation services and for acute care visits, eg, ambulance.

Help families prepare for travel by advising them to prepare a kit for travel that includes needed equipment and materials.

Communication

Question to consider:

  • Can the family and healthcare team communicate respectfully and effectively?
  • Has a plan been elaborated to ensure effective communication between the family and care providers?

It is essential that the care team and the family communicate effectively and respectfully with each other.  See the recommendations for families here. A relationship of trust must be established so that the family and the team can work together in partnership. If there are language barriers between the care team and the family, it is essential that a plan be put in place to ensure clear and effective communicate once at home. See Step 3. Make discharge care plans, below for suggestions on ensuring that plans are communicated between care providers, including the parents, effectively.


Accessibility

Questions to consider:

  • Does the family know who to call when problems arise at home? Does the family have 24/7 telephone access to a healthcare provider who is familiar with their child and/or has access to the child’s medical summary and care plans?
  • Does the family have a copy of an up-to-date medical summary and care plans?
  • What is the follow-up plan?

Transitioning from hospital to home is a first step in a challenging journey, a rollercoaster in the dark. We can expect that children with medical complexity will have both predictable and unpredictable complications or deteriorations. Families require ready access to a trusted and knowledgeable support so that they can develop the capacity to care for their child in a safe and sustainable manner. Ideally, families have ready 24/7 telephone access to a healthcare provider who is familiar with their child and/or has access to the child’s medical summary and care plan. For sub-acute issues, prompt evaluation may allow for interventions which ultimately decrease the need for re-hospitalization. For children with life-threatening conditions, an emergency care plan (see below) should be created and available to the family and key healthcare providers.


Step 3. Make discharge care plans addressing issues that may affect the health and safety of the child at home

As much as possible, simplify care at home; this greatly improves the sustainability and safety of care at home. Consider the family’s usual routines and try, as much as possible, to preserve the usual functioning of the family. Help the family reflect on how they will organize their day at home; suggest that they try out a few routines until they find the one that suits their family best. Simplify the timing of medications so that sleep (of the child and the parent) is disrupted as little as possible.

Home care plans include a variety of documents and should be tailored to the child and family’s specific needs. In general, key documents include:

a) a medical summary including a description of main issues, medications, allergies, alerts and baseline health status (weight, vital signs);
b) an emergency care plan including special instructions in the case of an emergency;
c) a day-to-day plan for usual care;
d) a sick day plan for mild or moderate changes from baseline health;
e) resuscitation guidelines, if appropriate.

A simple and effective method to prepare care plans, including day-to-day, sick day and urgent care plans is to use the analogy of a traffic light, something that everyone is familiar with. Use color coding on the care plan to quickly differentiate care plans using green for day-to-day care, yellow for sick day care and red for the urgent care plan.

Care documents must be updated and readily available in order to be effective in improving a child’s care. Date all documents and indicate when a revision is planned. Parental participation in the development of care plans is strongly recommended. Parents should keep a copy of all care plans, ideally in a readily available care organizer; copies should also be available in the child’s healthcare record and at the child’s school or daycare, if applicable. The emergency care plan, including a contact number for the healthcare team that knows the child best, should be shared with emergency department personnel.

Many templates exist for the medical summary and care plans; requirements for specific content may vary by region, as will the capacities of the electronic healthcare record in housing these documents for ready access. We are in the process of creating bilingual templates for use in Quebec; in the meantime find links to useful websites here.


Step 4. Finalize discharge

If there has been a meaningful investment in the preceding steps, then the child and family will be ready to transition to care at home… but be prepared for last minute problem solving! Children with medical complexity have both predictable and unpredictable fragility. If there is an unexpected health care problem or another unexpected issue, be ready to support families through this frustration or sadness. If possible, use these circumstances as a learning opportunity. For example, if a child with respiratory care needs develops new respiratory distress due to a pneumonia, ask the family to reflect if there were any warning signs of the illness and what they might have done if the problem had started at home.

As always, the goal of discharge is a safe and sustainable transition to care at home – basically, to go home and stay home, for as long as is possible. Plan a discharge date with the family and key healthcare partners. Check-in with the family about their child’s and their own readiness to go home. Depending upon the complexity of the child’s healthcare needs, consider discharge at the beginning of the workweek when there is more availability of healthcare resources compared to a weekend or holiday. Again, depending upon complexity, consider a discharge meeting to answer questions and to verify: parental capacity to provide required care, medications, equipment, supplies, homecare support, care plans, accessibility plans, etc. Use a checklist to organize and keep track of tasks throughout the discharge process. Use the summary of care steps included with each method of care to assess and document parental knowledge and skills. Verify that the family clearly understands and can communicate care plans, discharge instructions and follow-up directives.


Step 5. Prepare for follow-up visits (scheduled and acute)

Prepare the child, family and the healthcare teams for follow up visits, both scheduled visits and acute care visits. With families, review the information in “Getting the most out of a healthcare visit” in the Prepare yourself section of the website.

Coordinate follow-up visits to respect the family’s preferences, wherever possible. Many families prefer fewer healthcare visits to reduce time off work and school. For other children, the visit may be tiring; in this case, several short visits might be preferable. Coach families to keep track of appointments, using the suggestions in Organizing your child’s care.

And lastly… don’t forget to celebrate a successful transition in care from hospital to home! This is a major accomplishment that reflects effective teamwork. Recognize the child and family’s strengths and accomplishments… and those of the healthcare team. Consider a “discharge debrief” with key members of the team. Review processes that were successful and the challenges that were encountered. This is a great way for healthcare teams to build capacity and skill with discharges of children with medical complexity.


Hospital discharge criteria summary

 

References

American Academy of Pediatrics Ad Hoc Task Force on Definition of the medical home: The medical home (1992). Pediatrics. 90(5), 774.

Berry JG, Blaine K, Rogers J, McBride S, Schor E, Birmingham J, Schuster MA, Feudtner C.  (2014). A Framework of Pediatric Hospital Discharge Care Informed by Legislation, Research, and Practice. JAMA Pediatrics. 168 (10), 955-962.

Elias ER, Murphy NA, Council on Children with disabilities (2012). Home Care of Children and Youth with Complex Health Care Needs and Technology Dependencies. Pediatrics. 129 (5), 996-1005.

Hewitt-Taylor, J. (2012). Planning the transition of children with complex needs from hospital to home, Nursing Children and Young People, 24(10), 28-35.

Leyenaar J, O’Brien ER, Leslie LK, Lindenauer PK, Mangione-Smith RM. (2017). Families’ priorities regarding hospital-to-home transitions for children with medical complexity. Pediatrics. 139(1), 1-11.