0
Articles |

Origins and Development*: The Critical Care Family Assistance Program FREE TO VIEW

Marilyn A. Lederer, CPA; Tracy Goode, MHSA, MBA; Jane Dowling, PhD
Author and Funding Information

*From the CHEST Foundation (Ms. Lederer) and the American College of Chest Physicians (Ms. Goode), Northbrook, IL; and the Wellington Consulting Group, Ltd (Dr. Dowling), Gold Canyon, AZ.

Correspondence to: Jane Dowling, PhD, Wellington Consulting Group, Ltd, 8406 E. Canyon Estates Circle, Gold Canyon, AZ 85218; e-mail: janedowling@msn.com



Chest. 2005;128(3_suppl):65S-75S. doi:10.1378/chest.128.3_suppl.65S
Text Size: A A A
Published online

During the past 20 years, a new focus has begun to emerge in medical literature dealing with the ICU. Numerous articles have appeared asking questions with a different dimension. The focus of this research has not been to discover whether medical skill or modern technology was doing all it could to save lives or ameliorate suffering. The research did not have as its primary subject patients or hospital staff. Rather, it was focused on the family members of patients in the ICU. Several hundred studies and articles over the past 2 decades have focused on the environmental and social issues of anxious family members awaiting the outcome of a relative’s stay in an ICU. While research continues to explore numerous dimensions of this issue, existing studies have already created a growing awareness among administrators, physicians, nurses, and staff that attending to the needs of these family members is a responsibility that no hospital can ignore.

Researchers have studied the status of these families in a variety of ways. They have sought to discover whether the needs of the families of patients were being addressed and whether family members were satisfied with the way both the patient and the family were treated. Questions were posed cautiously at first, as researchers attempted to define more precisely the dimensions of the problems they were examining. Over time, virtually every area of the ICU was studied. Generally, it was discovered that increased communication, improved support systems, and a friendlier physical environment reduced feelings of frustration and contributed to an overall positive feeling of satisfaction. The findings presented a challenge to the health-care system. Hospitals were designed and staffed to care for patients; extending this care to others would require some fundamental changes in vision and organization.

Not all who were involved in this research and the dissemination of its results were in a position to make suitable changes. Individual ICUs made some modifications in their approach, but, generally, no broad or far-reaching changes were instituted. The leaders at The CHEST Foundation, the philanthropic arm of the American College of Chest Physicians, had followed this research closely and reasoned that, with broad support, something could be done to impact this problem on a national level. If a model was developed, and resources and leadership were provided, designated hospitals would have the opportunity to follow this research to its logical progression. Out of this decision emerged the Critical Care Family Assistance Program (CCFAP). The CCFAP commenced as a collaboration between The CHEST Foundation and the Eli Lilly and Company Foundation, which played an integral role in monetarily supporting the development of the program. The CCFAP was introduced into two hospitals in 2002; by the fall of 2004, it had been implemented in a total of six hospitals. Each of these hospitals, along with its ICU, customized its program to integrate well within its culture, and the success of the program has been documented for further replication. This supplement is an effort to share the unique stories of the CCFAP model sites, not merely as an historical record, but as a stimulus to others who might desire to follow the same path.

Specialized Family Studies

Independently of one another, those who investigated various aspects of human interaction within critical care focused on several major themes. Studying interaction at the time of bereavement was the object of study by a number of investigators. Kojlak and colleagues1were concerned about the impact that death had on both family members and staff. In the course of their investigation, they discovered that only 50% of the family members thought that they had received useful support from staff members. As if to confirm this, 30% of the health-care workers indicated that they were not at all comfortable with the dying process. In the same year, Malcrida and associates2 sought to discover and describe the reasons for any dissatisfaction found in families of patients who had died in the ICU. What they discovered in the sample was that almost all were generally pleased with the type of treatment received by the patient and, despite the death, had no overall criticism of the medical staff. However, about one third of family members felt dissatisfaction with the communication with staff. To some family members, the information received concerning the initial diagnosis was insufficient and unclear, and, for a greater number, the information received about the cause of death also seemed unclear. In general, these researchers found the medical treatment to be of superior quality, but the communication skills of the hospital staff were in need of improvement.

Following the same line of investigation, Kirchoff and others3 concluded that, too frequently, it is the lack of communication between the health-care providers and the family of the patient that contributes to anxiety and fosters greater grief at the time of death. When good communication is present, family members conclude that the best possible outcome has been achieved. In its absence, the resulting distress can be described as a vortex, beginning with a downward spiral of prognoses, marked by a succession of difficult decisions, feelings of inadequacy about necessary decisions, and, all too frequently, a death without goodbyes.

A researcher using constructs from Heideggerian hermeneutics presented another study of family members’ experience during the bereavement process. Warren4 found that the constructs that were considered to be helpful and satisfying in the period surrounding the death of a family member included information from the hospital staff, support from the family, and unrestricted visits. The constructs that were considered to be the most dissatisfying during this period were the inaccessibility of the physician, poor communication surrounding the cause of death, inadequate treatment, uncaring staff, and the inability to be present at the time of death.

Another study limited itself to examining family member dissatisfaction with family-clinician communication about withdrawing life support. In attempting to probe more deeply into the content of communication, McDonagh and others5 tested the hypothesis that an increased proportion of family speech during the process would result in greater satisfaction. When measured, on average, family members spoke 29% of the time and clinicians spoke 71% of the time. In all instances in which there was a higher proportion of family speaking, there was an increase in family satisfaction. Family satisfaction was not at all associated with the length of the conference.

The amount of anxiety felt by a family at the time of death is obviously affected by a variety of factors emerging from both the family and the ICU. Some of the families studied had some deep-seated feelings of dissatisfaction; others, despite their grief, felt general support from the clinical staff. Heyland and associates6 studied measured responses from individuals who had a family member die in one of six university-affiliated ICUs across Canada. Observations from this study are generally in accord with the other studies mentioned in this section and provide an opportunity for a summary about the reactions of family members who have experienced bereavement. Generally, the treatment that the dying patients received was not called into doubt, and the families were satisfied with the medical care the patients received. However, the factors that influenced their satisfaction were not affected by how the patients had been treated but how they, the family members, had been treated. The conclusion reached here was that the staff in an ICU needed to direct more supportive care and compassion toward family members.

Studies in Family Needs

Numerous studies have built on the work of Molter7 and analyze the needs of families dealing with patients in the ICU. Molter’s work led to the formation of the Critical Care Family Needs Inventory (CCFNI), which has been at the heart of many studies. The following 10 needs were identified as the most important to families:

  1. Feel there was hope;

  2. Feel hospital personnel cared about the patient;

  3. Have a waiting room near the patient;

  4. Be called at home about changes in the patient’s condition;

  5. Know the prognosis;

  6. Have questions answered honestly;

  7. Know specific facts about the patient’s prognosis;

  8. Receive information about the patient once a day;

  9. Have explanations given in understandable terms; and

  10. Be allowed to see the patient frequently.

In a later article, Leske,8 building on the work of Molter,7 was able to validate these classifications and group them into the following five domains of need: support, comfort, proximity, information, and assurance.

These studies were followed by others that sought to discover other aspects of family needs within an ICU. In examining these dimensions, Lam and Beaulieu9 further verified that information, assurance, and proximity to the patient were the primary family needs observed. The needs of family members for support, comfort, and rest were either ignored or continually postponed.

Employing techniques of cognitive research, Lopez-Fagin10 used the inventory of Molter7 to examine specific problems occurring in certain ICUs under study. The problems cited included the following: lack of visiting hour guidelines; lack of dissemination of information to families regarding the patient’s condition and treatment; lack of overnight accommodations; lack of a peaceful atmosphere in waiting rooms; lack of any distractive material such as books, magazines, or videos; and lack of understanding of family needs. The author discussed specific changes that were made to address each of these concerns.

Kosco and Warren11 pursued the problems caused by not meeting family needs. The stress and sense of disorganization that family members experience may diminish their capability in assisting the medical staff in making appropriate decisions for the patient. The focus is on supporting critical care nurses in either utilizing or acquiring the skills needed to deal with distressed family members.

The usefulness of the CCFNI of Molter7 was generally recognized internationally, and a number of countries had it translated into their own language. A group of Belgian researchers12 set out to examine the psychometric properties of the Dutch-language version of the CCFNI, exploring construct validity, reliability, and relationship to demographics. The study concluded that the CCFNI was a valuable tool in diagnosing the degree and extent of family needs. The findings essentially replicated those of the earlier discoveries of five need types, as follows: need for information; need for comfort; need for support; need for assurance and anxiety reduction; and need for proximity and accessibility.

A version of the CCFNI was also developed for use in China, and a study was initiated to determine whether the perception of needs by family members was similar or dissimilar to the perception of nurses. Another aspect of this study involved a comparison of cultures. In China, the family is the traditional foundation of society, and each member of the family plays a prescribed role. The hospitalization of a family member for a critical illness can easily upset the balance that exists between family members. The researchers13 found that four statements had statistically different rankings by the family members and the clinical nurses. Communication and proximity to the patients were all ranked higher by patients than by nurses. Nurses gave a higher ranking to environmental concerns, such as space in the waiting room and proximity to the bathroom.

As in other studies, the need for assurance and information was strongly expressed by family members. In this study, clinical nurses also recognized these needs but differed as to the intensity of the need. Culturally, the ratings for assurance and the importance of hope assumed much greater importance than in similar Western studies.

Further study of the CCFNI was carried out by researchers14 who examined 43 French ICUs. They used the instrument to measure the ability of ICU staff to meet family needs and to identify areas that, if modified, could lead to greater family satisfaction. Certain statements about caregivers were useful predictors of satisfaction. Family members expressed a preference for the following: a structured caregiver team in which the role of each caregiver was known; a single source physician who conveyed all information; sufficient time to interact with the physician and absorb the information given; and involvement of the family physician in receiving and reviewing the information. The study concluded that most factors that could improve family satisfaction were in the control of the caregivers.

Bond and others15 applied the CCFNI to the family members of patients with severe traumatic brain injury who were admitted to an ICU. Since this condition is one that usually occurs suddenly, with a very uncertain prognosis, family members are extremely vulnerable. Qualitative research with the family revealed the following four primary needs: (1) the need to know; (2) the need for consistent information; (3) the need for involvement in care; and (4) the need to make sense of the experience. Again, the researchers point out that the caregivers have it in their control to meet most, if not all, of these needs.

Studies in Family Satisfaction

Some studies have moved from examining the needs of the patient’s family, which have been fairly well-established, to a greater emphasis on the satisfaction with care. In the middle of a public debate over the cost-effectiveness of health care, the satisfaction of the public with the quality of health care cannot be ignored. Needs are important, but meeting or not meeting needs does not correlate exactly with either satisfaction or dissatisfaction. Heyland and colleagues16 measured family members’ satisfaction with the care of patients in six ICUs in university-affiliated hospitals. The conclusions from the study indicated that most family members were highly satisfied with the care delivered both to them and to their critically ill relative. The areas that provided the greatest satisfaction were nursing skill and competence and the compassion and respect shown to the patient. The least satisfactory areas were the waiting room atmosphere and the frequency of physician communication.

While similar studies in the United States indicated a somewhat lower level of general satisfaction,1718 this type of study moved the discussion from a consideration of needs to an active involvement in making those changes that would foster greater satisfaction. Heyland et al16 suggested that there be training programs in communication, especially for physicians, since every study indicated that communication was an unequivocal source of either satisfaction or dissatisfaction.

To assist in attempts to increase satisfaction with medical services, Wasser et al19 developed the Critical Care Family Satisfaction Survey to measure patient satisfaction. The survey was built around the following five subscales, which were derived from the measures of the of CCFNI of Molter7: assurance; information; proximity; support; and comfort.

Other specific strategies were researched, all aimed at producing greater satisfaction for family members. Peterson20 outlined an effort at education in the Duke University Health System. There, the staff developed a special pamphlet for the families of those undergoing coronary bypass surgery, although staff members thought that their experience indicated something similar could be used for any illness requiring patient care in an ICU. The pamphlet anticipates questions of family members and explains postoperative procedures. Pictures show key equipment and demonstrate their use. Patient surveys regarding the use of the pamphlet have been extremely positive; the medical staff determined that the pamphlet strongly reinforces what is also communicated in conferences and allows family members to reread certain items on issues about which they may be anxious.

A group of ICU staff members21 at Massachusetts General Hospital reported a program to enhance communication by utilizing trained hospital volunteers in the family waiting room. Communication with family members is an important part of the critical care nurses’ responsibilities; yet, other responsibilities may prevent the nurse from being present at the time that communication would be most valuable. Volunteers were recruited from the volunteer program of the hospital and were assigned to a critical care nurse who trained them and acted as a mentor. The volunteers were then available in the family waiting room area and served as a bridge between the family and the nurse. They listened to questions, were usually able to elicit answers in a reasonable amount of time, and frequently served as sympathetic listeners to alleviate families’ concerns. The favorable reception of the volunteers transferred to the critical care nurses, who were then perceived as more involved and empathetic with families. With minimal expenditure of time and resources, family satisfaction increased.

Another group of ICU staff members22 noticed how much information was lost by both the patient and the family concerning a patient’s stay in an ICU. The patient is almost always sedated and experiences either partial amnesia or unpleasant recollections. Family members are frequently upset and under severe stress. The task of putting together a coherent recollection of what has happened after the event is difficult. These gaps in memory, even for those patients with a successful outcome, leave patients and their families with dissatisfied and incomplete feelings about the ICU experience.

To improve this situation, the ICU staff22 determined to keep a notebook diary of each patient’s progress. On ICU admission, with the permission of the patient or a relative, the first entry is made by a nurse out of data directly provided by the patient or a relative. Subsequently, a nurse provides an entry in nontechnical language each day regarding the condition of the patient. Where appropriate, photographs are included, and when relatives have been involved in patient care, they are also allowed to contribute. The diary is given to the patient, or in the case of death, to relatives at a follow-up visit 2 weeks after ICU discharge. The book is used as a guide to review the course of the illness and to help in answering questions. A follow-up survey is sent 6 months after the illness asking about the reaction to the diary. The diary has proven successful in increasing satisfaction because it addresses directly the most basic needs of patients and relatives by providing information on what has transpired.

Two decades of research, discussion, and debate about the needs and opinions of family members of the critically ill have generated common themes. Not every study has had universal support; at times, defensiveness was noticed as some practices or customs came under criticism. In general, there has emerged agreement on a number of fundamental principles. It was on these following principles that the CCFAP model was developed:

  1. Health-care organizations have a responsibility to foster an environment that protects the physical and emotional health of severely stressed family members who assemble in their facilities to participate in the treatment of a relative.

  2. Any family-friendly or patient-friendly program must ultimately justify its presence in a hospital by demonstrating over time that it can have a positive impact on key issues, such as the health of the patient, length of stay in the hospital, satisfaction of family members, and cost-effectiveness.

  3. Nothing is as effective in meeting needs and promoting satisfaction, not only with the families but also with the hospital staff, as improved and consistent communication. All members of the staff must be able to depend on every other team member to be faithful to communication responsibilities.

  4. The implementation of a program, such as the CCFAP, requires a staff that is able to think and act in nontraditional ways. This ability to work constructively “outside the box” becomes a hallmark of a family-friendly program.

  5. While the ICU is the contact point for family members, the unit itself only exists as a part of the larger whole, the hospital. The CCFAP can only succeed when the goals and objectives of the program are in harmony with the priorities of the hospital. The changes made in the ICU must be integrated into the goals and objectives of the hospital and at other points in the care of critically ill patients.

Out of the research and the conclusions derived from the research, The CHEST Foundation designed the CCFAP program with a clearly stated goal and with corresponding objectives.

Goal

To respond to the unmet needs of families of critically ill patients in hospital ICUs through the provision of educational and family support resources.

Objectives

  1. To better prepare a multidisciplinary team to meet the needs of families of critical care patients;

  2. To increase families’ satisfaction with the care and treatment of critically ill family members while in an ICU;

  3. To improve families’ comprehension of and satisfaction with the information provided by caregivers;

  4. To identify common formats for providing information and financial resources across various models of care;

  5. To improve a hospital’s ability to respond to family needs within a structured feedback model;

  6. To increase the medical team’s knowledge and understanding of the CCFAP model and its purpose;

  7. To increase knowledge about the CCFAP and foster the dissemination of information about it within both the medical and lay communities; and

  8. To compare and contrast specific levels of family need across various models of care.

From the onset, it was evident that for the CCFAP to work a partnership needed to be developed between The CHEST Foundation and the sites selected to implement the program. The goals and objectives of the CHEST Foundation were specific, but they could only come to fruition when an ICU adopted them and began to apply them to its unique environment. In particular, the selection of the initial locations for the CCFAP constituted an important decision. The subsequent success of the CCFAP depended on the energy and flexibility of the pilot sites and their commitment to the partnership. These pilot CCFAP sites would not only shape the program according to the vision of the hospital staff and the needs of patients and their families, but they would inevitably serve as models for CCFAP replication.

The CHEST Foundation selected the pilot sites in January 2002, choosing two institutions that were known for high-quality care and were also institutionally diverse. Evanston Northwestern Healthcare of Evanston, IL, and the Oklahoma City Veterans Affairs (VA) Medical Center, in Oklahoma City, OK, were chosen to initiate the CCFAP. Evanston Northwestern Healthcare served as a functioning model for a hospital in a multihospital system, and the VA Medical Center in Oklahoma City served as a model for a statewide system of care.

Evanston Hospital is part of the Evanston Northwestern Healthcare system, which also includes Highland Park Hospital and Glenbrook Hospital. With 420 beds, the Evanston Hospital has a strong academic orientation, sharing faculty with Northwestern University Medical School (Chicago, IL), and has a residency program that is typical of a teaching hospital. In addition to serving its surrounding community within the northern suburbs of Chicago, it draws patients nationwide because of the excellent tertiary care offered in certain specialty areas, such as cardiac care. The ICU has 32 beds for cardiac care, medical/surgical care, and pediatric surgical care. Currently, the CCFAP is fully operational only in the medical/surgical unit.

The Oklahoma City VA Medical Center has 389 beds and is typical of VA hospitals across the country. Its major missions are to provide medical and surgical care to veterans of military service and, at the same time, to serve a statewide population as part of the University of Oklahoma Health Sciences Center. As would be expected in a hospital serving a largely rural population, over half of its active patients travel > 50 miles for care. The ICU has 30 beds, 10 each in the medical, cardiac, and surgical ICUs. The CCFAP encompasses all three units.

These two hospitals have proven to be influential pilot sites because of the presence of a physician champion and the buy-in of the hospital chief executive officer, as well as the diversity found in their geographic scope, organizational structure, and patient populations.

The CCFAP sites that were selected in 2003 and 2004 have utilized the lessons learned from the pilot sites and have responded to the unique characteristics of their own institutions in delivering care. The CCFAP has expanded to include four more models of care. The sites were selected because they represent different delivery-of-care models.

Highland Park Hospital, Highland Park, IL, was selected in 2003. As part of the larger Evanston Northwestern Healthcare system, Highland Park Hospital is under the same corporate umbrella as Evanston Northwestern Healthcare. Located only a short distance from Evanston, it has received mentoring from the staff and administrators at Evanston Northwestern Healthcare.

Also in 2003, The CHEST Foundation selected Ben Taub General Hospital, located in Houston, TX. This hospital is within Harris County, the largest county in Texas. It is the largest hospital in the Harris County Hospital District, with almost 600 beds, 16 beds in its medical ICU, and approximately 76 beds in its other ICUs. Serving largely an urban poor population, Ben Taub General Hospital has demonstrated the power of the CCFAP to operate in a large metropolitan hospital with a significant population of Medicaid and uncompensated care patients. For many of these patients, the emergency department is their sole source of care.

In 2004, Pardee Hospital in Henderson County, NC, was selected as a rural model for the CCFAP. Located 25 miles south of Asheville, NC, the hospital demonstrates the ability of the program to operate in a relatively small rural area with a service population of < 100,000 persons. More complicated cases are typically transferred to a tertiary care facility.

A second hospital was added in 2004, as a tertiary model of care, at the University of South Alabama Medical Center in Mobile, AL. This hospital serves lower Alabama, as well as the Mississippi and Florida gulf coast as the only level 1 trauma center on the gulf coast. The University Medical Center demonstrates the functioning of the CCFAP in a tertiary care center and at a research institution that is affiliated with a medical school.

Sites are typically introduced to the CCFAP in the following four phases: selection; team development; needs assessment; and planning.

Selection Process

The first phase consists of an annual selection process in which The CHEST Foundation invites hospitals to demonstrate their interest through a request for proposal according to the care model specified for replication (ie, urban, rural, and tertiary) and, then, makes a determination as to which interested hospitals would be best adapted to the requirements of the CCFAP.

Selection Factors:

In selecting sites to participate in the CCFAP, The CHEST Foundation has proceeded carefully and methodically. The following factors guide the selection of the sites:

  1. The concept of the CCFAP has to have the endorsement and support of the hospital and key staff members in the ICU. The difficulty of introducing change into a structured environment, such as an ICU, requires an acceptance of the goals and objectives of the program. The chances for success are diminished, unless there are champions who are convinced that change is necessary and who will overcome the inertia that exists in any large organization.

  2. The hospital and the ICU must be willing to dedicate resources to the program. While a start-up grant from The CHEST Foundation supports initial efforts, the hospital must be amenable to absorbing a portion of the costs associated with a significant change in patient care.

  3. There must be a commitment to diversity on the part of the hospital.

  4. The program needs to be introduced into hospitals that are capable of serving as models for other institutions. For that reason, the first hospitals selected for the CCFAP varied in type, with each serving to demonstrate what can be done in hospitals with different models of delivering care.

Once selected, institutions communicate with the administrative team from The CHEST Foundation to prepare full CCFAP implementation. During the initial phase, the hospital will work with CHEST Foundation staff to ensure that the hospital does the following:

  1. Understands and will replicate the CCFAP model;

  2. Prepares an action plan for implementing the project with a 1-year timeline; and

  3. Develops a realistic budget with plans for utilization in the critical care environment, including making necessary physical modifications and providing support services to family members through the participation of a multispecialty team.

Team Development

Any process calling for significant change within an organization requires some general agreement among those affected that the change is desirable. Within a structured organization of highly trained personnel, such as an ICU, the process of ensuring agreement cannot be left to chance. The process of team development in the CCFAP requires the following three elements:

  1. The emergence of leaders within the team is essential to show others how the project will succeed, to demonstrate the advantages to come from the program, and to overcome the inevitable doubts and hesitation about CCFAP implementation.

  2. The presence of sufficient resources of personnel, time, and money allows the team to overcome obstacles and bring the vision to life.

  3. A commitment to support and work with one another facilitates the achievement of the goals of the CCFAP. Each team member accepts the responsibilities of a designated role on the CCFAP implementation team.

The principal champions of the CCFAP team typically emerge from among the leaders of the ICU. A member of the critical care medical staff is appointed as project director. The day-to-day monitoring of the progress and the development of the program becomes the responsibility of the project coordinator. Both positions must have the endorsement of the hospital administration.

Experience has shown that the CCFAP requires a strong project coordinator. To the coordinator fall the responsibilities of assembling the core team, of communicating the roles of the team members, and of ensuring the completion of the assigned tasks. The project coordinator also has the responsibility of working effectively with the administration of the hospital, as well as with department staff, to seek out their support and assistance. The project coordinator role is typically best filled by one of the ICU nurses (usually a nurse manager) or an ICU social worker.

The project coordinator leads a core project team that develops the CCFAP plan for that site and develops a strategy for its implementation. The core project team is composed of staff members from the ICU, as well as representatives of the various departments of the hospital who interact with the unit. Since hospitals vary in organization and team priorities change from time to time, the members of other departments who work with the project team will also differ among CCFAP sites. The following are typical of the other hospital functions that might support the CCFAP team:

  • Administrator (ie, chief executive officer, president, and vice president)

  • Chaplain (ie, pastoral care director)

  • Dietary services director

  • Facilities manager

  • Hospital security director

  • Housekeeping manager

  • Integrative medicine representative (ie, massage therapist)

  • Management information system director

  • Medical director

  • Music therapist

  • Patient services coordinator

  • Public relations director

  • Social services director

  • Therapy services representative

  • Volunteer services coordinator

Needs Assessment

Central to the planning process is the needs assessment, which begins as soon as the CCFAP team is selected. The needs assessment can be done in a variety of ways. The most common methods involve the completion of surveys by families, individual interviews with both families and staff, and focus groups composed of family members. The professional staffs of The CHEST Foundation and the ICU participate in this assessment, which focuses on the following areas:

  1. Relationship between the critical care staff and the families of patients;

  2. Existing processes in place to make decisions affecting patients and their families;

  3. Information contained in the ICU and the flow of that information as it reaches staff, patients, and families;

  4. Types of services offered by the staff for the families of patients; and

  5. Interaction with the families of patients.

Results of the Needs Assessment:

While some variation exists between ICUs, generally, the needs assessments completed at the CCFAP sites support the 20 years of research and study that indicate gaps in support service to families. The most commonly noted gaps in service include the following areas:

  1. There is a discrepancy in viewpoint regarding the information shared. Staff indicates that information is generally available and communication is adequate. Family members indicate communication to be both sporadic and inconsistent.

  2. Family members want to open the decision-making process to more members of the family. Most staff members think a more limited number of family representatives is sufficient.

  3. Family members indicate that a number of services are not offered or are offered inadequately. Specifically, these include the following: a place to sleep or rest; an opportunity to talk with other families; help with travel arrangements, including expenses; a supply of coffee near the waiting area; and better instruction about the machines and devices to be used for home care.

Planning

From the needs assessment phase, CCFAP project teams move immediately into the planning phase. Since not every team member begins with the same set of expectations, planning becomes a critical, ongoing process. Generally, teams avoid the twin pitfalls of planning. They do not turn the process of planning over to the program director or the project coordinator and abdicate responsibility. That would produce a plan without support or understanding. Likewise, they do not forget the goals and objectives of the CCFAP while involved in the planning process. That would also produce a plan, but one that is far removed from the reality of the critical care center and its concerns. The action plan becomes a living, working document that guides the team in implementation. The plan specifies the necessary steps and the anticipated results, and it projects a comprehensive timeline.

The CHEST Foundation provides support and technical assistance to the site while the planning and development phases are underway. The administrative team of The CHEST Foundation regularly visits each site, confers with team members, and provides guidance in areas in which sites may request assistance. Between visits, regular teleconferences are held with each site to review progress and to ensure that challenges are addressed. The CHEST Foundation provides a template for the planning process that assists in making the process more efficient and more effective. The budget is developed simultaneously with the action plan and mirrors the priorities that the team has assigned to the various components of the CCFAP.

One direct measure that has emerged from the planning process in every site has been the effort to give each ICU developing the CCFAP a distinct identity. This CCFAP branding reflects the steps that have been taken to make the ICU environment more accessible. For example, sites have adopted a slogan that reflects a commitment to patients and their families. Some sites have developed a tagline and a logo to communicate the mission of the CCFAP within the hospital, as follows:

  • Evanston Northwestern Healthcare: “A Promise To Care”

  • Oklahoma City VA Medical Center: “Family Care: We Care Because You’re Family”

  • Ben Taub General Hospital: “Project FAIR: Families Assisting in Recovery”

  • Highland Park Hospital: “A Promise To Care”

  • Pardee Hospital: “The Caring Connection”

  • University of South Alabama Medical Center: “Where Caring Does Not End With the Patient”

The proof of the effectiveness of the CCFAP lies in the implementation of the chosen plan and the establishment of a persistent evaluation program. The CCFAP program model is based on a design of service, much like the service provided by a hotel concierge, with the project coordinator acting as the concierge. All of the services described in the following sections are designed to achieve the goal of the program of meeting the needs of families of critically ill patients in hospital ICUs.

Communication

All of the research that led to the development of the CCFAP emphasized the critical impact of communication on families waiting for news. One study calculated the long hours that family members were willing to sit in a less than pleasant environment just to hear a few words from a doctor or nurse. Maintaining some relationship with the family had been, for many decades, the role that critical care nurses filled. The shortage of nurses in this field, as well as the ever-expanding time demands created by new medical technology, has left less time for nurses to fulfill this traditional function. In addition, some information can be communicated only by physicians who are treating the patient.

Each of the sites has implemented new procedures to assure better communication with families about the patient. In a number of instances, the role of the social worker has been expanded to ensure timely communication. Needs assessment surveys identified the following points of anxiety and irritation: surgery being cancelled and the family not being informed; an extensive stay in the recovery room after surgery and the family kept unaware of the reason; contradictory information being received from different sources; and the inability to locate or talk to the physician.

To deal with these irritants and other areas of unfamiliarity, one ICU has established weekly family sessions in a group setting called the “ICU Navigators.” The hospital director of pastoral care and the social worker meet with families and attempt to make the unit less formidable. Explanations are given about equipment, medical procedures are explained, key staff members are identified as contact points if information is coming too slowly, and guidance is given on ways of being appropriately assertive without being disruptive. At all sites, specific individuals have been designated as being responsible for knowing the families, and ensuring that questions are answered and appropriate conferences take place in a timely manner. Staff members have been made responsible for ensuring that meetings take place between physicians and families, handling logistics when several physicians are treating the patient.

Other specific steps, such as adding telephones to waiting rooms or providing cell phones or pagers for family members when they must leave the hospital, have been successful in reducing family stress and facilitating communication. Contact with the patient has always been an important priority for family members. With this in mind, each site has reviewed its policy for visiting hours. Where possible, these hours have been expanded within parameters that are consistent with the well-being of the patient.

Environmental Changes

All hospitals have identified environmental factors requiring improvement. Each ICU has sought to provide families a more relaxed, less institutional space during a stressful period. Basic changes have included expanding the waiting area to make it less cramped, brightening the look of the room with new paint, or providing newer and more comfortable furniture and carpeting. Additional environmental changes have included the following: redesigning a room to serve as a sleeping room for families traveling great distances; placing visible signage where it welcomes visitors; expanding a waiting room and giving it the atmosphere of a lounge, where coffee and soft drinks are available; supplying additional telephones; and placing a television and VCR in the waiting area. Several units have designed and created family consultation rooms for family conferences with physicians and staff. These environmental changes have all been designed to enhance comfort and communication, allowing families to feel more comfortable during a period of stress.

Education and Information Materials

The CCFAP model seeks to assist ICUs in the important task of delivering unambiguous, but compassionate, information to families of ICU patients. Families require this information first, to cope with their distress, but primarily to participate in making decisions about family members who cannot speak for themselves about critical care decisions. The sites seek to develop a family-centered approach, providing both general medical information, as well as very specific information about the loved one. Centers have developed brochures to explain the CCFAP and to make family members aware of the services available. In addition, sites supply a variety of written material to assist family members in becoming familiar with staff. Materials include a loose-leaf notebook with the names of the staff, including photos, telephone numbers, and responsibilities; and contact sheets listing the name, telephone numbers, and other physician contact information. Publications have included pamphlets with most frequently asked questions, as well as maps and diagrams of the hospital. A variety of other publications are also available, presenting information in nontechnical language about the physical conditions that affect many of the critical care patients. In locations where it is appropriate, all materials have been translated into languages spoken by the representative patient population, such as Spanish, Russian, or Vietnamese.

Information Kiosk

In addition to the wealth of information provided in printed format, each site has made a commitment to electronic communication. All sites have set up an information kiosk with an easy-to-use computer that can provide information for families. The kiosk might include any or all of the following components:

  • Electronic messaging systems allowing families to send messages to nursing staff and physicians;

  • Internet portals to medical information that is written for the layperson;

  • Internet portals to local city information, including restaurants, local events, day care centers, respite care information, health clubs, maps, and a wide variety of additional practical information;

  • Screens customized for CCFAP information, offering material about advance medical directives, as well as tutorials on home care equipment displayed by streaming video and subtitles;

  • Screens with information about the hospital, including pictures and biographic summaries of critical care team members;

  • Information about hospital hospitality discount programs available through the CCFAP, offering discounts for food, transportation, and lodging; and

  • CCFAP family satisfaction surveys and a feedback section for evaluations and quality improvement activities.

The information kiosks have been installed as a response to the stated needs of families seeking a great amount of complex information in a short period of time. The kiosk allows family members to have needed information on hand at all times and provides information for members to use in discussions with other family members, as well as in preparation for meeting with physicians.

Hospitality Program

The majority of the CCFAP sites found that certain needs that once were considered peripheral were actually very important to families. For some families who travel a long distance and face an extended stay, assistance in finding housing becomes a priority. While hospitals negotiated lower rates at nearby hotels, The CHEST Foundation and American College of Chest Physicians assisted directly by obtaining discounts at hotels operated by Hilton and Marriott. At the Oklahoma VA Medical Center, the local Ronald McDonald House offers rooms when available for only $20 a night.

Assuring that meals are available and affordable is an important hospitality function for CCFAP sites. Coffee and soft drinks are made available in family waiting rooms, with occasional snacks offered. Local restaurants, when requested, have offered discounts, while hospitals provided vouchers for their own cafeterias. Transportation vouchers were provided for local taxicab service, and discounts were negotiated with car rental companies. Integrated medical services are also offered to family members.

Other Services

One of the pilot CCFAP sites has offered massage therapy to stressed family members. In two CCFAP sites, music therapy is offered directly to the patients, and family members may participate, as well. One CCFAP site is evaluating pet therapy.

Institutional Support

The CHEST Foundation administrative team continues its support of each site through every phase of planning and implementation. Sites either have regularly scheduled conference calls with The CHEST Foundation, or a representative of The CHEST Foundation visits the site. As evaluation data are produced, the CCFAP evaluator periodically visits each site to review the data and provide technical support for any revision of the implementation plan. In addition, The CHEST Foundation sponsors an annual meeting where representatives of each site gather to review program challenges and successes. This networking experience is essential to the dissemination of diverse CCFAP operational strategies.

A distinguishing feature of the CCFAP is the effort made to consistently gather data about the program so that new and existing sites will be able to replicate features of the program, which match the needs of their institution and have been successful elsewhere. The CHEST Foundation has commissioned the making of a toolkit that is designed to be a practical, step-by-step guide through the various stages of designing and constructing a family assistance program.

The toolkit is basically an action plan designed around the various stages that are critical in the development of a CCFAP. It does not merely aim to coach the reader through these steps and offer general advice. Instead, as its name implies, it provides tools. There are 38 tools, each providing specific step-by-step guidance through a key development phase of the program. While the toolkit may be read cover to cover by any group contemplating the program, its more pragmatic use is as a resource manual to be consulted during each phase of implementation, as needed.

The toolkit is organized into the following four phases: (1) designing the CCFAP; (2) implementing the CCFAP; (3) evaluating and improving the CCFAP; and (4) sharing CCFAP lessons. The toolkit is available from The CHEST Foundation at www.chestfoundation.org.

The primary considerations in developing the CCFAP were focusing on the families of patients in the ICU and demonstrating various strategies of family support. Equally important, new models of care emerged from implementing the CCFAP across diverse care settings. They included addressing factors that reflect the quality and cost of critical care delivery.

  • Length of Stay. If stress and anxiety can be reduced for families, the assumption is that for certain patients, this will accelerate the healing process and reduce the length of time spent in the ICU. Some anecdotal evidence from critical care nurse supervisors appears to validate this assumption.

  • Costs/opportunity costs. While the resources that need to be provided to operate an ICU in conformity with the CCFAP guidelines represent an additional expense, careful study must be conducted to determine whether those costs are recovered through the more efficient use of all resources, the greater cooperation and coordination between departments, and an increase in the standing and reputation of the hospital in the community because of these innovations.

  • Efficiency of care. The CCFAP calls for the utilization of a multispecialty team dealing with a wide variety of problems within the ICU. The team can operate efficiently because each member performs a specialized function within a background of wide-ranging communication. Predictions of shortages of specialized skills within the health-care profession will lead to a study on the more efficient use of personnel.

  • Enhancing care. The CCFAP provides an opportunity for the enhancement of care through an increased pattern of communications that is organized around the topics of integrative medicine, palliative care, and end-of-life consultation services.

  • Policy Imperatives. The CCFAP can make a distinct contribution, as policies affecting projected workforce shortages, growth of a geriatric population, and an increased population of the elderly facing many years of home care are reviewed and discussed.

Abbreviations:FS CCFAP = Critical Care Family Assistance Program; CCFNI = Critical Care Family Needs Inventory; VA = Veterans Administration

Kojlak, J, Keenan, SP, Plotkin, D, et al (1998) Determining the potential need for a bereavement follow-up program: how well are family and health care workers’ needs currently being met?Off J Can Assoc Crit Care Nurs9,12-16
 
Malcrida, R, Bettelini, CM, Degrate, A, et al Reasons for dissatisfaction: a survey of intensive care patients who died.Crit Care Med1998;26,1187-1193
 
Kirchoff, KT, Walker, L, Hutton, A, et al The vortex: families’ experiences with death in the intensive care unit.Am J Crit Care2002;11,200-209
 
Warren, NA Critical care family members’ satisfaction with bereavement experiences.Crit Care Nurs Q2002;25(suppl),54-60
 
McDonagh, J, Elliott, T, Engelberg, R, et al Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction.Crit Care Med2004;32,1484-1488
 
Heyland, D, Rocker, G, O’Callaghan, C, et al Dying in the ICU: perspectives of family members.Chest2003;124,392-397
 
Molter, N Needs of relatives of critically ill patients: a descriptive study.Heart Lung1979;8,332-339
 
Leske, J Internal psychometric properties of the Critical Care Family Needs Inventory.Heart Lung1991;20,236-242
 
Lam, P, Beaulieu, M Experiences of families in the neurological ICU: a bedside phenomenon.J Neurosci Nurs2004;36,142-155
 
Lopez-Fagin, L Critical care family needs: a cognitive research utilization approach.Crit Care Nurse1995;15,21-26
 
Kosco, M, Warren, NA Critical care nurses’ perceptions of family needs as met.Crit Care Nurs Q2000;23,60-72
 
Bijttebier, P, Delva, D, Vanoost, S, et al Reliability and validity of the Critical Care Family Needs Inventory in a Dutch-speaking Belgian sample.Heart Lung2000;29,278-286
 
Leung, K, Chien, W, Mackenzie, A Needs of Chinese families of critically ill patients.West J Nurs Res2000;22,826-840
 
Azoulay, E, Pochard, F, Chevret, S, et al Meeting the needs of intensive care unit patient families.Am J Respir Crit Care Med2001;163,135-139
 
Bond, A, Draieger, C, Mandleco, B, et al Needs of family members of patients with severe traumatic brain injury: implications for evidence-based practice.Crit Care Nurse2003;23,63-72
 
Heyland, D, Rocker, G, Dodek, P Family satisfaction with care in the intensive care unit: results of a multiple study.Crit Care Med2002;30,1413-1418
 
Tilden, V, Tolle, S, Garland, M, et al Decisions about life-sustaining treatment impact of physicians’ behaviors on the family.Arch Intern Med1995;155,633-638
 
Abott, K, Sago, J, Breen, C, et al Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support.Crit Care Med2001;29,197-201
 
Wasser, T, Pasquale, M, Matchett, S, et al Establishing reliability and validity of the Critical Care Family Satisfaction Survey.Crit Care Med2001;29,192-196
 
Peterson, M Visual tools for families: a picture is worth a thousand words.Crit Care Nurse2000;20,96
 
Appleyard, M, Gavaghan, S, Gonzalez, C, et al Nurse-coached intervention for the families of patients in critical care units.Crit Care Nurse2000;20,40-48
 
Backman, C, Waither, S Use of a personal diary written on the ICU during critical illness.Intensive Care Med2001;27,426-429
 

Figures

Tables

References

Kojlak, J, Keenan, SP, Plotkin, D, et al (1998) Determining the potential need for a bereavement follow-up program: how well are family and health care workers’ needs currently being met?Off J Can Assoc Crit Care Nurs9,12-16
 
Malcrida, R, Bettelini, CM, Degrate, A, et al Reasons for dissatisfaction: a survey of intensive care patients who died.Crit Care Med1998;26,1187-1193
 
Kirchoff, KT, Walker, L, Hutton, A, et al The vortex: families’ experiences with death in the intensive care unit.Am J Crit Care2002;11,200-209
 
Warren, NA Critical care family members’ satisfaction with bereavement experiences.Crit Care Nurs Q2002;25(suppl),54-60
 
McDonagh, J, Elliott, T, Engelberg, R, et al Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction.Crit Care Med2004;32,1484-1488
 
Heyland, D, Rocker, G, O’Callaghan, C, et al Dying in the ICU: perspectives of family members.Chest2003;124,392-397
 
Molter, N Needs of relatives of critically ill patients: a descriptive study.Heart Lung1979;8,332-339
 
Leske, J Internal psychometric properties of the Critical Care Family Needs Inventory.Heart Lung1991;20,236-242
 
Lam, P, Beaulieu, M Experiences of families in the neurological ICU: a bedside phenomenon.J Neurosci Nurs2004;36,142-155
 
Lopez-Fagin, L Critical care family needs: a cognitive research utilization approach.Crit Care Nurse1995;15,21-26
 
Kosco, M, Warren, NA Critical care nurses’ perceptions of family needs as met.Crit Care Nurs Q2000;23,60-72
 
Bijttebier, P, Delva, D, Vanoost, S, et al Reliability and validity of the Critical Care Family Needs Inventory in a Dutch-speaking Belgian sample.Heart Lung2000;29,278-286
 
Leung, K, Chien, W, Mackenzie, A Needs of Chinese families of critically ill patients.West J Nurs Res2000;22,826-840
 
Azoulay, E, Pochard, F, Chevret, S, et al Meeting the needs of intensive care unit patient families.Am J Respir Crit Care Med2001;163,135-139
 
Bond, A, Draieger, C, Mandleco, B, et al Needs of family members of patients with severe traumatic brain injury: implications for evidence-based practice.Crit Care Nurse2003;23,63-72
 
Heyland, D, Rocker, G, Dodek, P Family satisfaction with care in the intensive care unit: results of a multiple study.Crit Care Med2002;30,1413-1418
 
Tilden, V, Tolle, S, Garland, M, et al Decisions about life-sustaining treatment impact of physicians’ behaviors on the family.Arch Intern Med1995;155,633-638
 
Abott, K, Sago, J, Breen, C, et al Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support.Crit Care Med2001;29,197-201
 
Wasser, T, Pasquale, M, Matchett, S, et al Establishing reliability and validity of the Critical Care Family Satisfaction Survey.Crit Care Med2001;29,192-196
 
Peterson, M Visual tools for families: a picture is worth a thousand words.Crit Care Nurse2000;20,96
 
Appleyard, M, Gavaghan, S, Gonzalez, C, et al Nurse-coached intervention for the families of patients in critical care units.Crit Care Nurse2000;20,40-48
 
Backman, C, Waither, S Use of a personal diary written on the ICU during critical illness.Intensive Care Med2001;27,426-429
 
NOTE:
Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).

Some tools below are only available to our subscribers or users with an online account.

Related Content

Customize your page view by dragging & repositioning the boxes below.

  • CHEST Journal
    Print ISSN: 0012-3692
    Online ISSN: 1931-3543