Patient and Family Centered Care – Transitions in Care: Hospital to Home
By Karen I. Wayman, PhD; Philip R. Fischer, MD; Farris Timimi, MD; and Maureen Connor, RN, MPH
This article on the transition from hospital to home is the third in a series (see sidebar, pg. 28) that focuses on the healthcare journey of patients and families using the experiences of a real patient, Max. Vignettes have been extracted from a presentation given by Valerie, Max’s mother at One Voice: Patient- and Family-Centered Care, a program held at Mayo Clinic in 2008. These articles highlight how family-centered practices can enhance the healthcare experience for patients and their families.
Background
Advances in medical treatments and biomedical technology are extending the lives of increasing numbers of young, seriously ill children. Approximately 14% of children in the United States have special healthcare needs (Kogan et al., 2009). They often are hospitalized for extended periods of time for ongoing medical treatment. For these young patients and their families, the hospital can be a frightening place, yet it can also be perceived as a safe place, where parents are confident their child will receive the best care possible. Paradoxically, leaving the hospital may be the most challenging experience for parents since they often need to learn complicated medical regimens to maintain their child’s health at home. However, discharge education and concomitant parent participation in care often occur only when discharge is imminent, at times, on the day-of discharge. Consequently, parents experience discharge as a fast-paced, task-driven event filled with rapid decision-making and unfamiliar expectations (Ahmann, 2004). The result is that families return home with unmet needs, incomplete education, and low perceived self-efficacy to care for a child with special healthcare needs, potentially increasing risk for complications and hospital readmissions. This situation is contrary to long-standing evidence that active patient participation in determining care and participating in discharge planning leads to better patient outcomes (Greenfield et al., 1985).
Effective Transitions to Home
A productive discharge is the result of good communication and parent education throughout a child’s hospitalization. With this approach and delivery of medical information compatible with a parent’s communication preferences and level of comprehension, the parent can be a “knowing partner” (Shepperd et al., 2013; Anthony & Hudson-Barr, 2004, Lerret, 2009). The result is better outcomes for children—a goal shared by parents and providers.
An example of an effective discharge is described by Valerie, the mother of Max, who within hours of birth underwent emergency open-heart surgery for total anomalous pulmonary venous return (TAPVR). Max was hospitalized for three weeks, including five days on extracorporeal membrane oxygenation (ECMO). Valerie describes preparing for her transition from hospital to home:
As the days passed, and Max was free from ECMO, Jeff and I began taking over some of the parenting duties while Max was still in the hospital. Being able to hold and even nurse Max gave me great comfort. We better understood and paid attention to medical information about Max and appreciated the information doctors and nurses would share with us. When a doctor would ask me, rather than the room nurse, how Max’s day was going, it made me feel I was accepted and respected as part of the team working to get him well—and eventually the person who would be primarily responsible for keeping him well and whole. It made me realize I could and should learn as much as possible—there was every reason to do so—doctors would listen to me, even expect me to know more about my son than any of them. Living only a few minutes away from the hospital helped, and Max was going home with no other challenges. Furosemide and aspirin were his only medications. Jeff and I went through a CPR class and had all the phone numbers and names we needed, as well as a healthcare summary.
As Max’s mother’s experience illustrates, parents need to learn complex medical information under the most challenging conditions. She described an ongoing journey of parent-provider communication that moved from simple to complex—from holding Max to understanding his cardiac status. The clinical team’s approach to information and communication was supportive, permitting Max’s parents to absorb complex information while increasing their sense of competence to care for Max at home. The clinical team built Max’s mother’s competence over time. As she said,
I discovered the care and support shown by the clinical staff was both meaningful and confidence building. I discovered I would be the person who would be primarily responsible for keeping him well and whole—it made me realize I could and should learn as much as possible.
One VoiceThe Consortium for Maximizing Family-Centered Care was established during a panel presentation at “One Voice: Patient- and Family-Centered Care Program” at the Mayo Clinic in Rochester, Minnesota, on November 13, 2008. Since that time, the Consortium has collaborated on this series of articles; some of the material in the series was taken from the program. Consortium members (and co-authors of each paper in this series) include: |
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Maureen Connor, RN, MPH Philip R. Fischer, MD Cezanne Garcia, MPH |
Jason H. Homme, MD Valerie McCarty Patricia F. Sodomka, FACHE, MS, MHA |
Dana Mara Thompson, MD, MS, FACS Farris Timimi, MD Karen I. Wayman, PhD |
Suggestions for Patient- and Family-Centered Discharge
With the move toward healthcare efficiency, the focus on discharge has been on efforts to reduce length of stay or readmission rates (Shepperd et al., 2013; Anthony & Hudson-Barr, 2004). There is a growing focus, however, on family communication, engagement, and readiness for discharge with an emphasis on the link between patient and family readiness for discharge and reduced readmissions (Weiss et al., 2007). Two-way communication between parents and healthcare providers affords opportunities to improve patient discharge to home. More specifically, studies show that having healthcare providers identify unique and individual parent needs and subsequent support is instrumental to parents’ sense of readiness to care for their children at home (Lerret, 2009).
A literature review on parental discharge readiness found four concepts strongly influenced discharge: parental support; identification of individual parent needs; sufficient knowledge about care management, and effective communication with the healthcare team (Lerret, 2009). Griffin and Abraham (2006) suggest that family-centered discharge should include:
- embedding the family in caregiving and decision making throughout a child’s hospitalization,
- individual discharge teaching,
- partnering with families to determine care priorities, and
- enabling parents to assist in care documentation.
Lewis & Noyes (2007) propose a set of discharge guidelines to assure that families receive well-coordinated care after they leave the hospital. They suggest that hospital staff members acquire a robust knowledge of community services and establish a multidisciplinary and integrated discharge planning team, and that, when appropriate, discharge should be a conjoint hospital-community endeavor.
Program Examples
Both Mayo Clinic and Lucile Packard Children’s Hospital have developed models to improve the transition from hospital to home. Packard Children’s has standardized the information flow at family-centered medical rounding so that discharge is discussed each day with the bedside nurse, the patient, and the family. The result is that as the discharge date nears, all members of the team, including family members, are aware of discharge goals and potential barriers.
To enhance this process, Packard Children’s is implementing a Family Self-Management Unit that will use trained parent mentors to assist family members to develop skills to manage their child’s care both in the hospital and at home. All families will receive training on the parents’ role in discharge and will be given the opportunity to attend a weekly Discharge Readiness Parent Group. This group, led by a social worker and parent mentor, will provide information and resources related to preparing for discharge and managing care at home. An online patient portal will provide family members with expanded access to discharge plan components such as care procedures, medication administration, and future appointments. Overall, the goal is to provide discharge education that is matched to family preferences and readiness rather than hospital schedules and daily task checklists.
At Mayo Clinic, clinicians facilitate transitions in care by having the bedside nurse meet with the medical team and family during rounds. Goals and discharge criteria can be updated daily on a white board in the patient’s room. Later, the bedside nurse collaborates with other staff in reviewing written dismissal summary documentation and plans for both treatment and follow-up with the family as they prepare to leave the hospital. At Mayo Clinic, dismissal summaries are prepared electronically in a way that allows for documentation of input by various members of the care team (physician, nurse, dietitian, therapists, clinical nurse specialist), which is then confirmed and signed by the physician. The physician and/or bedside nurse review the dismissal summary and ongoing care plan with the family.
Increasingly, staff members at the Mayo Clinic are managing the challenges of ensuring that the patients’ primary care providers (and medical homes) are kept connected with inpatient and tertiary providers so as not to “lose” patients between teams. Communication strategies need to span geography; video visit and electronic consult systems are being established. A work group is currently seeking to manage transitions between teams as patients transition across age spectrums and as evolving chronic conditions cause patients and families to move between providers and institutions.
A patient-and family-centered discharge planning process is a crucial part of the inpatient stay. Done effectively, it can both alleviate parental concerns and ensure that parents acquire knowledge, skills, and confidence to manage their child’s care. Placing families at the center of care throughout an admission, working and learning in active partnership with the healthcare team, and emphasizing the importance of care coordination across the care continuum are the best ways to achieve this. When parents are involved and consulted by clinicians throughout the course of their child’s care, and when there are processes in place for effective care coordination, discharge planning doesn’t need to be a stressful event. Instead, it can be what it should be: a celebration of the family’s return home.
Karen Wayman is director of family-centered care at Lucile Packard Children’s Hospital in Palo Alto, California.
Philip Fischer is professor of pediatrics at Mayo Clinic in Rochester, Minnesota.
Farris Timimi is assistant professor of medicine and Consultant in Cardiovascular Diseases and Internal Medicine at the Mayo Clinic in Rochester, Minnesota. He is also the medical director of the Mayo Clinic Center for Social Media.
Maureen Connor is a healthcare consultant at Claremont Consulting Partners in Arlington, Massachusetts. She may be contacted at mconnor97@comcast.net.
REFERENCES
Ahmann, E. (2004). How to prepare families for discharge in the limited time available. Pediatric Nursing, 30(3), 212-227.
Anthony, M., & Hudson-Barr, D. (2004). A patient-centered model of care for hospital discharge. Clinical Nursing Research, 12, 117-136.
Greenfield, S., Kaplan, S., & Ware, J. (1985). Expanding patient involvement care. Annals of Internal Medicine, 102, 520-528.
Griffin, T. & Abraham, M. (2006). Transition to home from the newborn intensive care unit: Applying the principles of family-centered care to the discharge process, Journal of Perinatal & Neonatal Nursing, 20(3), 243-249.
Kogan, M., Strickland, B., & Newacheck P. (2009). Building systems of care: Findings from the national survey of children with special healthcare needs, Pediatrics, 124(S4), S333-335.
Lerret, S. (2009) Discharge readiness: An integrative review focusing on discharge following pediatric hospitalization. Journal for Specialists in Pediatric Nursing, 14:4, 245-255.
Lewis, M., & Noyes, J., (2009) Discharge management for children with complex needs. Pediatric Nursing, 19:4, 26-30.
Shepperd S., et al. (2013, January 31). Discharge planning from hospital to home (Review). The Cochrane Database of Systemic Reviews. doi: 10.1002/14651858.CD000313.pub4
Weiss, M., Piacentine, L., Lokken, L. Ancona, J., Archer, J, Gresser, S., et al. (2007). Perceived readiness for hospital discharge in adult medical-surgical patients. Clinical Nurse Specialist, 21(1), 31-42.
Patient- and Family-Centered Care
Other articles in this series are available at www.psqh.com/archive/84-2008-2014
May/June 2014
Family Presence During Resuscitations and Invasive Procedures
By Maureen Connor, RN, MPH; Valerie McCarty; Dana M. Thompson, MD, MS, FACS; Philip R. Fischer, MD; and the Consortium for Maximizing Family-Centered Care
March/April 2014
Advancing Quality and Safety with Bedside Rounding
By Jason H. Homme, MD; Maureen Connor, RN, MPH; Valerie McCarty; and Philip R. Fischer, MD