Family-Centered Critical Care: A Practical Approach to Making It Happen

Abstract

Although much has been written about the needs of patients’ families and the need for change in practice, little has been published about how to make family-centered care work. This article offers practical suggestions for implementing or improving family-centered care in the critical care environment. The information presented here will be useful to clinicians and administrators who are committed to fostering family-centered care.The needs of family members of critically ill patients are well established: the need for information, the need for reassurance and support, and the need to be near the patient.1–7 Despite a wealth of evidence supporting these basic needs, many critical care units continue to struggle with implementing or maintaining family-centered critical care. Family-centered care moves beyond a theoretical recognition of the centrality of patients’ family members in healthcare. A family-focused unit views a patient’s family as the unit to be cared for and organizes care delivery around the patient’s family, as opposed to the more traditional patient-centered model.4Providing family-centered care is not a simple endeavor. Our experience indicates that units that are successful in adopting a family-centered approach typically have characteristics such as strong leaders, a caring staff, and the support of a committed multi-disciplinary team. Promoting a family-centered environment takes time and patience. Members of the team who may be resistant to a change to family-centered care typically have very real concerns that are based on their underlying beliefs and attitudes. For example, research suggests that nurses may view visitors as physiologically stressful to patients and thus will try to restrict visitation in order to protect patients.8 Limiting visitation in the intensive care unit is also perceived as important for patients’ family members, to allow them time to care for themselves and prevent exhaustion.8Our current healthcare era, marked by consumerism, shorter stays in the intensive care unit and the hospital, and nursing shortages, makes family-centered critical care less of an option than it once was. Family members are now active participants in planning the care of their loved ones. Shorter hospital stays mean that patients’ family members are taking on an ever-increasing role as direct caregivers. Higher acuity of patients and nursing shortages mean that family members will play a critical role in the delivery of care both in and out of the hospital. It is not only inappropriate but also impractical to ignore family members waiting outside the double doors to the critical care unit. The time has come to embrace the family members of our patients and integrate them into a holistic plan of care.Although much has been written about the needs of patients’ families and the need for change in practice, little has been published about how to make family-centered care work. Our purpose in this article is to offer practical suggestions for implementing or improving family-centered care in the critical care environment. We think that the information presented in this article, which is based on research and our own experiences, will be useful to clinicians and administrators who are committed to fostering family-centered care.Much confusion remains over what family-centered critical care actually is. Many clinicians incorrectly equate family-centered care with open visiting. This misconception stems, in part, from the widespread implementation of policies for flexible visiting hours in units that are attempting to provide more family-oriented care. Family-centered care is not a singular intervention but rather a philosophical approach to care that recognizes the needs of patients’ family members as well as the important role that family members play during a patient’s illness.No single intervention and not even a group of interventions will ensure a family-focused environment. For example, it would be incorrect to assume that simply allowing a family member to be at a patient’s bedside 24 hours a day would mean the staff was meeting the family’s needs. In fact, having a family member present in a situation in which staff members are not equipped to meet the family’s needs could ultimately have adverse consequences. Family members may be more stressed if they are ignored by a nurse or are made to believe that they are somehow in the way or interfering with the patient’s care.In many ways, family-centered care can be thought of as an extension of patient-focused care, a concept that gained widespread attention in the early 1990s. The underlying premise of patient-focused care was that delivery of care should be centered on the needs of the patient as opposed to a more traditional approach in which care was based on what worked well from an organizational perspective. Family-centered care simply takes patient-focused care to the next step and widens the circle of concern to include those persons who are important in a patient’s life.The confusion over family-centered care often gives way to frustrations for many staff members who think that family-focused care may not be in the best interest of either patients or nurses. For example, family-centered care does not mean that patients lose their rights to privacy or control over their environment. Patients who are able should always be asked to what extent (if any) they want their family to participate in care. Patients may, in fact, not want any visitors or any information given out to family members. Family-centered care simply recognizes the family’s involvement as a choice and lets patients know that family members are welcome should the patients so choose.The important point that we must stress here is that the needs of the patient are always the priority, even in a family-centered environment. Research indicates that it is important to patients’ family members to be assured that the patient is receiving the best possible care.9 Interventions such as having family members present during procedures and resuscitations help to reassure family members that everything possible is being done for the patient.8 Meeting a patient’s needs should always be the priority for both the patient’s family and the nurse.Staff members are also sometimes concerned that family-centered care demands that staff relinquish all structures within the unit that allow some semblance of order in this otherwise chaotic environment. This concern is absolutely not the case. During a critical illness, patients’ families will benefit from guidance and structure to help them to cope. What a family-centered philosophy does require is that outdated rules and regulations that were imposed for the benefit of the organization rather than patients or patients’ families should be reexamined. Structures (such as assessment tools) and policies that provide for the support and safety of patients and their family members are generally welcomed by family members and help staff members to carry out their responsibilities in a timely and efficient manner.One intervention that can be useful in clarifying misconceptions about family-centered care is to post an informational flyer in the unit (Table 1). This type of document gives staff members straightforward, useful information that clarifies a sometimes nebulous concept. It is helpful for staff members to see that the essence of family-centered care is consistent with patient-centered care. In addition, staff members are often reassured by knowing that boundaries and limitations are still in place and that the expertise of staff members remains a critical factor in ensuring the success of family-centered care. Although not all encompassing, such a flyer gives the staff a chance to see in writing what family-centered care is and is not and provides a point for future discussion.As mentioned previously, the most important needs of families of critically ill patients are the need for information, the need for reassurance and support, and the need to be near the patient.1–7 Although seemingly straightforward, these needs can be interpreted in many ways. Depending on how the needs of families are interpreted, nurses may have concerns about their ability to meet those needs in addition to all their other responsibilities for patients. Thus, it is important that nurses receive clarification about what meeting needs of patients’ families actually entails.For some family members, the crisis of their loved one’s illness has created a situation that requires more intensive family support or counseling. In these situations, additional help and support from our colleagues in social services and spiritual care is required. However, nurses can be reassured that for most family members, important needs can be met by basic nursing interventions such as giving information about the patient’s well-being, providing reassurance, and offering families a flexible visiting schedule.The type of information that families want from nurses is related to the patient’s general well-being. Patients’ family members look to nurses for information about vital signs (stable vs unstable), comfort level, and sleeping patterns. They do not expect the nurses to give information about prognosis, diagnosis, or treatment plan.2 This statement does mean that nurses cannot or should not give this type of information. Nor should it suggest that nurses do not play an important role in helping patients’ family members understand or interpret this type of information. It simply means that nurses should not feel overwhelmed or be concerned about the amount of information they are expected to impart to patients’ families. Nurses have several roles related to meeting the information needs of patients’ families. One is to assess the families’ needs and ensure that the appropriate party addresses their questions and concerns. The other is to be familiar with the information given to families by others and to provide clarification when questions or concerns arise.Family members need to know that their loved one is being cared for in the best way possible and that everything that can be done is being done. The need for reassurance and support does not mean that families want false hope for a recovery that will not occur. Dramatic examples of providing reassurance and support often occur in situations in which a patient is dying and the patient’s family is assured that the patient’s comfort is the ultimate priority. When a patient is dying, assisting with end-of-life issues is of great value and comfort to both the patient and the patient’s family. The most effective means of providing reassurance and support often has little to do with spoken words, but rather are demonstrated to the family by the gentle ministering of a caring practitioner.Family members want to be near their loved ones who are sick. Not only do they want to provide support by “being there” but also physical presence allows them to witness how their family member is being cared for. The success of flexible visiting practices may stem, in part, from simply allowing patients and their families to be together, thereby facilitating meeting the families’ needs for information and support.Although the needs of family members may seem straightforward, it is a mistake to assume that all personnel working in the unit know what these needs are. Multiple interventions must be implemented by unit managers and clinicians interested in promoting a family-centered approach. Strategies such as hanging colorful posters outlining the needs of patients’ families in high-visibility areas in staff conference rooms or including a list outlining those needs in a hospital/staff newsletter can be effective in increasing staff awareness.Units with family-centered philosophies incorporate family-centered care into all appropriate standards and policies for the units. It is important to translate this philosophy into concrete messages for patients, their families, and staff. For example, family members should be told on their first visit that the unit has a family focus. New staff members should also be made aware of the unit’s family focus. The nurse recruiter or manager interviewing potential employees should emphasize the role of all staff members in meeting the needs of patients’ families (Table 2).Hospital and unit administrators play a key role in ensuring that family-centered care is valued in the organization. Administrators can serve as powerful role models by participating in decisions related to family-centered care and in valuing and rewarding staff members who demonstrate family-focused behaviors (Table 2).Bedside nurses cannot meet the needs of patients’ families and take care of the patients all by themselves. The key to effective family-centered care is to train all staff members about the needs of patients’ families. Programs related to meeting the needs of patients’ family members must include every member of the healthcare team.Unit secretaries, security guards, volunteers, housekeepers, and aides are often the first contact that patients’ families have with the hospital or unit. These persons can be enormously helpful and effective in providing support to the family members. For example, instead of being viewed as “gatekeepers,” unit secretaries should function as liaisons between patients’ families and nursing staff, assisting in relaying information and helping support family-centered decisions (such as appropriateness of visitation). Hospital volunteers have been successfully employed as family “caregivers” in an intensive care unit to provide nonmedical information, comfort, and support.10Professional support from our colleagues in medicine, social work, and pastoral care is essential if family-centered critical care is to be effective. Unfortunately, the expertise of these professionals is often not sought out until a crisis has occurred. A better strategy is to have standards that provide a consistent, proactive approach to meeting the needs of patients’ families.A variety of tools such as information booklets and checklists have been suggested as ways to meet the information needs of patients’ families.11,12 Information booklets provide family members with concrete information about who is who and what to expect in a unit. Checklists outlining the specifics of what to say and do during a family member’s visit are especially helpful for new employees and ensure consistency from one staff member to the next11 (Table 3). Family-centered assessment tools and policies are other examples of structures that support family-centered care (Tables 4 and 5).Teaching materials related to procedures, including routine bedside care, can be helpful to patients’ families and can save nursing time. For example, family members can be taught to provide basic care such as passive range of motion and mouth care. Instructions for these basic care procedures can be posted in the patient’s room for a reference, along with a list of family members who have received instructions and have demonstrated that they can successfully provide the care.Concern over violence in the workplace is a frequent deterrent to establishing a family-centered environment. Obviously, the safety of staff members and patients is a primary concern. All security issues must be addressed, and steps must be taken to ensure safety. On the other hand, the potential for violence should not preclude patients and families from being together and having their needs met during a critical illness.One approach to attending to security and family issues is to include representatives from the hospital security department in discussions and planning when visiting policies are being examined. The expertise of these team members will be valuable not only initially but also later as problems and concerns arise.Front-line personnel such as security teams play a critical role in ensuring that the needs of patients and patients’ family members are met. As initial responders or greeters, these personnel set the standards and expectations for patients’ families. The primary message conveyed to family members should be that they are valued and welcome. At the same time, however, it should be made clear that there are certain standards (eg, calling before entering the unit) that must be adhered to.A frequent concern voiced by patients and their families is the inconsistency in the information they receive. Perhaps the most classic example of this inconsistency is related to visiting hours. It is quite typical for individual nurses to be comfortable letting patients’ family members visit quite liberally, regardless of the actual visiting policy. When another nurse comes along on the next shift or sometimes days later and enforces the written policy, confusion and often anger ensues from the family members even though the second nurse may actually be following the policy as it is written.Inconsistency wreaks havoc with families who are struggling to maintain some control over an otherwise uncontrollable situation. When they see inconsistency in a visiting policy, they may start to question the existence of other inconsistencies, such as how treatments are carried out and how individual nurses manage patients’ problems (eg, pain).Inconsistencies are also detrimental to staff members and set up a “good nurse–bad nurse” phenomenon that is difficult to resolve. Antiquated visiting practices that restrict patients’ families are a good example of a policy that sets up nurses to fail as they struggle to meet the needs of patients’ families by bending the rules. The way to deal with this problem is to establish policies that allow nurses to coordinate visits depending on the needs of a patient and his or her family as opposed to establishing “rules.”One of the most important things nurses can do to help patients and patients’ family members cope during the crisis of an illness is to be consistent. Consistency means that standards of care are applied in the same way to every patient and his or her family, every time.Ensuring that a consistent standard of care is maintained falls under the purview of the governing bodies of the critical care units. The unit-based critical care committee, together with nursing and physician directors, plays an important role in ensuring that standards of care for patients and patients families are met.Perhaps the biggest mistake a unit can make is to view family-centered care as solely within the domain of nursing. All members of the team who have contact with patients’ families play an important role in ensuring that the families’ needs are met. Among others, these team members include physicians, nurses, respiratory therapists, physical therapists, pastoral care, social workers, and dieticians. From the start, leaders interested in promoting a family focus must recognize the unique contribution and expertise of each member of the team relative to the patients’ families in the unit. When family care is a team function, not only do patients and their families benefit, but also nurses will be less overwhelmed with the responsibility to provide care.Most successful family-centered programs have a few key persons who are committed to making family-centered care happen in their organization. Together with key players in the organization, this group serves as the steering committee, exploring ways to prepare the staff and create necessary changes.Implementing a family-centered approach to care is only the beginning of an ongoing institutional commitment. As is the case with any process of change, the more preparation that goes into implementation, the more smoothly the process will ultimately go. However, regardless of the preparation, new challenges and issues will inevitably arise in an organization dedicated to family-centered care.It is unreasonable to expect that staff members will suddenly know how to handle every situation simply because a change in philosophy has occurred. Time must be devoted at unit staff meetings, conferences, or unit retreats to discuss challenging cases and concerns and to solve problems.Adopting a family-centered approach also does not mean that “difficult” or “challenging” families will disappear. Despite the best intentions, philosophies, or standards, there will always be patients families with needs different from the norm. However disheartening or frustrating these situations may be, everyone involved should try to view these families as the exception rather than the rule. One goal of family-centered care should be to have fewer of these challenging family situations as a result of standards of care that are proactive in meeting families’ needs. Early, aggressive, consistent attention to patients’ family members can dissipate many of the typical family concerns that could erupt into more serious issues if the concerns are not addressed.Establishing a family-centered unit does not happen overnight. Adopting a family-centered philosophy and then creating standards and policies to support that philosophy take time.The time has come to embrace the practice of family-centered care. Patients and their families have basic needs that must be met if healthcare institutions are to be successful in addressing consumers’ needs and providing holistic care.Strategies for ensuring successful family-centered care are not difficult, but they require embracing a philosophy that recognizes the needs of patients’ families and the value of a pro-active approach to ensuring that those needs are consistently met.