Home Care For The Medically Fragile Patient:
Transitioning Them Home
As our healthcare environment continues to evolve, we find that children are discharged from various facilities with more acute and greater care needs than in the past. Hospital lengths of stay have been shortened. Parents are taking more responsibility at home for the medical needs of their children. It is now common for these children to come home with complex care needs and dependent on technology. The staff at the homecare agency the family chooses work to ensure a safe, organized transition for pediatric patients. There are several aspects to ensuring a successful transition home, and the Clinical Manager at the home care agency is involved in managing and driving these.
The first is a strong relationship with the Hospital Discharge Planning department in the facility. The discharge planner is an employee of the facility. His or her job is to assist patients and their families plan for ongoing care and services following discharge from the facility. Discharge planning typically starts the day of hospital admission (although this may be invisible to the patient and family in the very beginning). Due to the complexity of care, discharge planning is especially critical for technology-dependent children to prepare the family to care for the child at home.
Transitioning the technology-dependent child requires careful planning and coordination among all individuals and providers who will participate in caring for the child. A meeting should be arranged for all providers including the facility discharge planner, primary nurse and/or social worker, the home care clinical manager and the physician. All of the providers involved in the care of the child should:
- Review the medical history and current plan of treatment including medications, treatments and equipment settings
- Determine and plan for the child and family needs following discharge
- Assess family dynamics, parent's knowledge base and training received to date
- Assess equipment needs, determine who will supply the home medical equipment (HME), oxygen, etc. and making arrangements for delivery to the home
- Determine any other agencies or community resources needed
The home care clinical manager should also arrange to meet with the family in their home in order to begin to establish a strong relationship (which is vital), determine the adequacy of the home environment and plan for changes needed (such as the removal of door saddles to accommodate wheelchair access as needed); determine the family's needs and to discuss expectations, concerns and preferences related to homecare of the child. During this discussion, the nurse will have the opportunity to talk about the company, the nurse's qualifications and credentials, scheduling processes, and general expectations.
In addition, they should discuss:
- The benefits and limitations of home care
- Initial and ongoing payer or insurance authorization process and the parent's and agency's role in obtaining authorization for services
- The "realities" of homecare and issues that may arise, such as:
- Staffing, coverage and cancellation
- Practice differences among caregivers
- Personality differences and working with multiple caregivers
- The need for orientation
- The importance of protecting the family's privacy
- Professional boundaries and limitations of caregivers
In addition, it's important for families to recognize differences in the level of "authority" of health care workers in the facility vs. the home environment. A good home care agency will protect the parent's authority and acknowledge the fact that agency staff is a "guest" in their home.
The agency will work with the payers, secure authorization for services and determine a communication plan to keep the payer apprised of the care, services and patient condition as well as frequency of ongoing authorization requests.
Home care for technology-dependent children usually consists of extended hourly, or "shift" care. The numbers of hours of care per day depends on the payer requirements, the child's needs and condition and physicians orders.
It's important for the clinicians and clinical manager to maintain ongoing communication with the patient and family -- established during the start of care -- in regard to how the patient is progressing (or not), changes in condition, care and treatment as well as future needs.
Good homecare agencies will:
- Recognize each family's strengths, weaknesses and coping mechanisms
- Respect ethnic, cultural, economic and religious differences
- Understand that the parents and family are the primary decision-makers
- Know that the primary goals are always to foster independence of family function while providing appropriate support as needed
- Understand the special relationship between parents and clinicians
- Maintain a professional relationship. This promotes a positive enjoyable experience, reinforces the family's feelings of competence and independence, enables the family to maintain privacy
- Always include the family and child as appropriate in goal setting and measuring progress towards discharge
It takes a lot of commitment, planning and coordination to safely transition the technology-dependent child home. But just a few years ago these children would live their lives in some type of facility. Pediatric home care agencies empower families to live as full a life as possible with their medically fragile child at home. Transitioning a child from a facility to home is the mission of these agencies and one that matters deeply to all concerned.