Patient and Family Centered Care: Error Disclosure and Investigation
Patient- and Family-Centered Care: Error Disclosure and Investigation
By Maureen Connor, RN, MPH; Karen I. Wayman, PhD; Cezanne Garcia, MPH; Philip R. Fischer, MD; and the Consortium for Maximizing Family-Centered Care
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| Figure 1. Max after his first surgery | |
| Max was born with a serious medical condition and benefited from patient- and family-centered care. Today he is a happy and healthy 11-year-old boy. | |
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| Figure 2. Max and his sister Fiona hiking at Whitewater State Park in Minnesota |
This is the fourth and final article in a series on patient- and family-centered care. In it, Valerie continues the story of her son Max, who was born with a congenital cardiac anomaly, and describes how she intercepted a medical error before it reached him. The article addresses the principles of disclosure and discusses future directions for error investigation. It concludes with a summary of benefits associated with patient- and family-centered care.
Intercepting a Medical Error
In one study of medication errors, approximately 50% of patients experienced an error following discharge, which represents an important opportunity to understand more fully what leads to errors (Mixon et al., 2014). Engaging patients and families directly in avoiding harm and ensuring safe care has emerged as an area of interest in healthcare (Weingart, 2012). As an engaged parent, Valerie relates her story:
We were happy to give Max all the parenting we could while he was in the hospital, but we never did reconcile ourselves to the medicine, equipment, tubes, and lines that surrounded him. An hour or so before we left to bring Max home, a nurse handed me a tiny syringe with a tiny amount of furosemide and let me practice giving him the oral dose. Once it was time for Max’s first dose at home, my husband brought me a large syringe filled with a big mouthful of medicine. I refused to give it to Max because I feared it was too much. A few phone calls later, my fears were confirmed, and we learned that a decimal point had been moved on the prescription, so that it read 10 times the correct dose. I don’t know if simply seeing the furosemide given to Max would have registered clearly enough for me to question the dose when we got home. Inviting hesitant parents into the medical care of their child is a vital step in patient safety and best outcomes.
In this case, Valerie was able to challenge the dose of furosemide dispensed to Max because she had administered the drug while he was still hospitalized. Her confidence to speak up was bolstered by her genuine partnership with the staff, fostered during her son’s lengthy hospitalization. Families are the stewards of patient safety because they are keen observers of all aspects of care, including questionable practices and changes in their child’s condition. Staff members should welcome family engagement as integral to a vital safety net.
Disclosure of Medical Errors
Errors happen, and there is risk of patient harm. Even as providers work to prevent them, how should they respond when errors occur? When medical errors are identified, true apology—where responsibility has been taken and remorse conveyed—aids in the healing of patients and providers (Lazare, 2006). In Max’s situation, the on-call nurse apologized for the medication error after Valerie reported the incorrect dose. Other evidence suggests that patients want their physicians to be forthcoming with information about errors and that healthcare organizations should share plans for preventing a recurrence. Understandably, patients and families expect honest and empathetic explanations from providers (Gallagher, 2005). Of note, among medical trainees, attitudes are shifting with nearly twice as many interns (71%) willing to fully disclose their mistakes now as compared to 10 years ago (38%) (Varjavand et al., 2012).
One Voice |
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The Mayo Clinic Division of Cardiovascular Diseases views patient and family advisory councils (PFACs) as a strategic opportunity for partnership with patients. This reflects two trends: first, the competitive demands that limit the time available for direct patient-provider engagement, and second, the evolution of the patient-provider compact, from one of uni-directional information flow to one that more fully encapsulates partnership. Moreover, the value of quality communication has become more evident, not just to the patient and provider, but also from a regulatory perspective. Review of questions included in the Hospital Consumer Assessment of Healthcare Providers and Systems H-CHAPS (http://www.hcahpsonline.org) survey outlines the need, as nearly three-quarters of the questions focus on communication. At present, the monthly PFAC meeting agenda is booked four months in advance. Engagement continues online, where Mayo uses Yammer® to engage patients and their families behind the Internet security firewall. In the midst of redesigning the outpatient practice, the lead administrator has aptly observed that practice redesign would not occur without obtaining input from the PFAC. Fundamentally, there has been profound impact from opening processes to patients and seeking their input in a formalized fashion. Mayo Clinic calls this process One Voice, a choir singing in harmony. Together, we are more. |
Disclosure of medical errors should occur as soon as possible after the error has been discovered (O’Donnell 2004). In situations where the patient or family identifies the error after discharge, as in Valerie’s case, the meeting to review the event could take place at the family’s convenience, if they are coming to the clinic for an appointment over the next week or so. Otherwise, a special meeting should be scheduled to avoid any undue delay. In essence, the timing of the meeting depends on the severity of the event and the family’s needs.
In a series of focus groups, some patients suggested that a patient advocate could provide emotional support (Gallagher, 2003). For example, a social worker may reduce the emotional burden that patients and families experience by being present during disclosure meetings and providing ongoing support. Moreover, families may not understand how long investigations take. Therefore, a supportive mechanism to meet both immediate concerns and those over the long term should be in place.
Certainly, the needs of the patient come first. At the same time, though, healthcare professionals can suffer debilitating emotional distress when they have been involved in a serious medical error. Healthcare organizations should develop formal plans to support affected clinicians and staff members in managing stress and recovering from its effects (Roesler et al., 2009).
Although efforts have been made to improve transparency surrounding the identification and investigation of medical errors, there are still opportunities for improvement. The correlation between offering greater transparency and improving patient safety should help fuel these necessary changes (Kachalia, 2013).
The framework for good disclosure should always be determined from the patient’s perspective. Healthcare organizations should have a plan to respond rapidly to medical errors and provide timely disclosure to patients and families. Furthermore, support should be provided for staff members, as they will have their own unique set of needs. The investigation results should also include a set of risk reduction strategies to prevent a similar occurrence in the future. Simply stated, disclosing medical errors is the right action to take from many perspectives. (When Things Go Wrong, 2006).
Future Directions for Medical Error Investigations
Including patients and families in event investigations is a growing area of interest in the analysis of medical errors. One case study from Australia describes a family’s involvement in the disclosure process and illustrates their valuable contribution to helping staff better understand the events leading to a critical error. Rather than simply posing questions, the family shared their perspective on what had occurred, leading to a greater understanding of how the events unfolded. Providing an opportunity for open discourse benefits both the family and staff (Iedema & Allen, 2012).
Patients and healthcare experts participated in a stakeholders’ conference in Houston, Texas, as part of a two-phase study on patient and family involvement in adverse event analysis. Participants concluded that a number of different approaches to patient and family involvement might need to be taken while focusing on creating “a partnership in learning” between patients, families, and staff members. One method might include allowing families to choose among various options for involvement from the organization’s process for learning from the event. (Etchegaray et al., 2014).
Families are an untapped resource whose involvement will add credibility to the analysis of adverse events. Including them holds tremendous promise for enhancing quality of care and patient safety. Over time, healthcare providers have come to appreciate the complexity of medical errors and the multiple root causes that contribute to them. How can event investigations acknowledge that fact and not include patients and families? It is incumbent upon healthcare organizations to figure out the optimal way to include the voice of the family to learn from their experiences. The patient and family’s seat at the table should not remain empty.
Policy, Training, and Support for Disclosure
Written policies may help healthcare organizations establish a standard for what and when to disclose (Gallagher et al., 2009). This proved to be the case at the Dana-Farber Cancer Institute in Boston, Massachusetts, when a policy was created in 2002. Although there had been a long-standing expectation of full disclosure when medical errors occur, the new policy prompted senior leaders to address the issue of near-miss error reporting and to define in writing which medical errors should be disclosed. The policy provides details of all of the elements associated with disclosure in a question-and-answer format and has served as a helpful guide for clinicians preparing for these critical discussions.
There are various approaches to the method of family-centered disclosure training for staff. Training programs that employ simulation techniques are emerging as effective in training teams to work together during disclosure (Gallagher & Studdert, 2007; Jeffs et al., 2010). Simulation typically provides clinicians with opportunities to practice effective and empathic disclosure communication skills with constructive feedback from colleagues and mentors. Stanford Children’s Hospital used simulation to train nursing staff on effective disclosure communication and added a troupe of trained parents from the Family-Centered Care Department to add to the verisimilitude of the training. Findings included a significant increase in nurses’ self-efficacy for communicating about medical errors (t= 6.68, p < .001), with participants rating the training as highly realistic and effective (Wayman et al., 2007).
Stanford Health Care (formerly Stanford University Hospital and Clinics) includes a family member to support its disclosure efforts. Stanford Healthcare Risk Management hired Leilani Schweitzer in 2011, six years after she lost her son Gabriel due to a series of medical errors at Stanford’s Children’s Hospital. Leilani provides assistance with the early communication and resolution program called PEARL or The Process for Early Assessment and the Resolution of Loss. In this role, she explains the medical care review process to families and supports them as an empathetic listener who has been through the experience. She assists families in understanding timelines for the investigation and stays connected with them throughout the process. She also helps ensure that written communications from the legal department are delivered in a way that families can understand. As Leilani has stated, “For patients and families who have experienced medical errors, disclosure is not a trending development in healthcare; rather, it is an essential component to our healing and understanding.”
Benefits Related to Patient- and Family-Centered Care
Throughout this series, the story of Valerie’s experience with Max’s healthcare team has revealed that benefits accrue for patients, families, staff members, and institutions when care providers cultivate the involvement of patients and families as partners in medical care. Her description of partnering with staff highlights the power of storytelling as a means to promote change in practice. Despite having well-trained and highly skilled professionals with incredible expertise, healthcare organizations have been missing a major element of successful patient care: viewing care through the eyes of patients and families. As organizations incorporate patient-centeredness into their care processes and policies, they will begin to see healthcare through a new lens (see One Voice, page 38).
Successfully embedding patient- and family-centered care into the fabric of an organization requires a commitment to integrate family-centered care as a standard of care. The level of detail and coordination involved in implementing major practice changes requires a system-level approach, particularly to sustain these efforts over time.
Implementation of patient- and family-centered care is, in many instances, an evolutionary process; techniques keep changing as situations evolve. Standardized processes may help reduce variability in the quality of care, but they must still be adapted to specific needs within specific settings. For instance, careful time studies of the rounding process can help overcome some perceived obstacles to family-centered bedside rounds (Bhansali et al., 2013).
At the centers profiled in this series, it has helped to have advocates or champions committed to patient- and family-centered care involved in ongoing processes to ensure that habits don’t slip back to “old ways” that might seem more comfortable. The adage that “You can’t manage what you don’t measure” also holds true. As an example, at the Mayo Clinic, communication of daily plans and goals on in-room white boards waned until monitors started “keeping score” of compliance by different hospital services. Competition between teams helped maintain the habit of updating plans and goals for families.
Even as careful research into the values of patient- and family-centered care continues (Clancy, 2010), evidence is emerging that healthcare providers benefit from engaging with patients and families and involving them in their own care: when rounding, resuscitating, communicating, transitioning between care providers, and when reviewing outcomes—even errors.
As Max heads into the future in good health, we can all try to “Maximize” the value, quality, and safety of the care that we provide as we incorporate families and unify their voices with ours. Based on expert consensus and a growing body of evidence, patients and family members should be seen as equal partners in care. The voices of patients and families should not only be heard but also resonate throughout healthcare decision-making processes.
The Consortium for Maximizing Family-Centered Care |
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| The 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: | ||
| Maureen Connor, RN, MPH Healthcare Consultant Claremont Consulting Partners Arlington, Massachusetts Philip R. Fischer, MD Cezanne Garcia, MPH Jason H. Homme, MD |
Valerie McCarty (Max’s mother) Co-coordinator Mended Little Hearts of Southeast Minnesota Rochester, Minnesota Patricia F. Sodomka, FACHE, MS, MHA |
Dana Mara Thompson, MD, MS, FACS Division Head- Pediatric Otolaryngology Head & Neck Surgery Ann & Robert H. Lurie Children’s Hospital of Chicago Professor of Otolaryngology Northwestern University Feinberg School of Medicine Chicago, Illinois Farris Timimi, MD Karen I. Wayman, PhD |
Some of the material in this paper was initially presented as part of the “One Voice: Patient and Family Centered Care Program” forum in Rochester, Minnesota, on November 13, 2008.
Maureen Connor is a healthcare consultant at Claremont Consulting Partners in Arlington, Massachusetts. She may be contacted at mconnor97@comcast.net.
Karen Wayman is director of family-centered care at Lucile Packard Children’s Hospital in Palo Alto, California.
Cezanne Garcia is the program manager for Community and School Based Partnerships at Public Health – Seattle King County in Seattle, Washington.
Philip Fischer is professor of pediatrics at Mayo Clinic in Rochester, Minnesota.
All four articles in this series on patient- and family-centered care are available on PSQH’s topic page for patient engagement: http://psqh.com/topics/patient-engagement
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