(Chest. 2005;128:106S-110S.)
© 2005
American College of Chest Physicians
Project Director’s Perspective*
The Critical Care Family Assistance Program
Kalpalatha Guntupalli, MD, FCCP;
D. Robert McCaffree, MD, Master FCCP;
Jeffery Vender, MD, FCCP;
Gail Clary, MD, FCCP and
Joseph LoCicero, III, MD, FCCP
* From the Ben Taub General Hospital (Dr. Guntupalli), Houston, TX; Oklahoma City Veterans Affairs Medical Center (Dr. McCaffree), Oklahoma City, OK; Evanston Northwestern Healthcare (Dr. Vender), Evanston, IL; Pardee Hospital (Dr. Clary), Hendersonville, NC; and University of South Alabama Medical Center (Dr. LoCicero), Mobile, AL.
Correspondence to: Kalpalatha Guntupalli, MD, FCCP, Baylor College of Medicine, Ben Taub General Hospital, Houston, TX; e-mail: kkg{at}bcm.tmc.edu
Key Words: communication • critical care • end-of-life • family-centered care • family satisfaction • patient satisfaction
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Introduction
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The Critical Care Family Assistance Program (CCFAP) is designed to respond to the unmet needs of families of critically ill patients in hospital ICUs through the provision of educational and family support services. In May 2002, the Joint Commission on the Accreditation of Healthcare Organizations convened an advisory panel to explore the establishment of an "ICU core measures set framework." The panel, composed of experts in critical care representing academic medical centers, medical specialty societies, the federal government, and business consulting groups, seeks to develop a framework for ICU core measures and the identification of potential key measurements within that framework. One of the goals of the CCFAP model is to be capable of meeting those measures, and from a research perspective, to provide data that will contribute to the field of critical care medicine.
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CCFAP Model Sites
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The sites selected for participation in the CCFAP have been chosen for their geographic, institutional, and patient diversity. CCFAP research studies focus on the similarities and differences within each of the following model types.
Community Teaching Hospital
One of the original pilot sites is an example of this model. Evanston Northwestern Healthcare, located in suburban Chicago, IL, shares faculty with Northwestern University Medical School, has a residency program defining it as a teaching hospital, serves the local community, but also draws patients from across the country due to its excellent tertiary care in certain specialties. In 2003, the CCFAP was expanded to a second hospital within the Evanston Northwestern Healthcare system, Highland Park Hospital in Highland Park, IL.
Governmental Institution for Veterans of US Military Service
The Oklahoma City Veterans Affairs Medical Center, Oklahoma City, OK, the second pilot site selected, reflects this model and serves a statewide and regional population.
Inner-city Hospital
Ben Taub General Hospital in Houston, TX, a replication site selected in 2003, reflects this model, having a large Medicaid and uncompensated care population.
Academic Medical Center
The University of South Alabama Medical Center, located in Mobile, AL, is an example of this model, because it consists of a tertiary care center and research institution that is affiliated with a medical school. This replication site was selected in 2004.
Rural/Small Community Hospital
Pardee Hospital of Hendersonville, NC, is an example of a "feeder" hospital in a geographic area of < 100,000 persons that may have a small ICU but will typically transfer patients with more complicated cases to a tertiary center. This model was selected during the 2004 replication cycle.
Each of these hospitals replicates the CCFAP model, seeks new ways to respond to the unmet needs of the families of critically ill patients, and demonstrates how the CCFAP program can serve as a model of care for families of critically ill patients in ICUs or wherever critical care is delivered within the hospital setting.
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Background
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In section 1 of this supplement, "Origin and Development: The Critical Care Family Assistance Program," numerous studies conducted over the past 2 decades are cited, which investigate the varied reactions of families with loved ones in ICUs. One research study1 examining these and other studies of families involved with an ICU concludes, "The results of these studies suggest that family members want honest, intelligible, and timely information; liberal visiting policies; and the assurance that their loved one is being cared for by competent and compassionate people." Burck,2 in a commentary on the ethical responsibilities of those charged with operating an ICU, notes that quality of life claims that are developed without the patient’s participation are very susceptible to observer bias and that any ICU that does not include the objective measurement of family satisfaction is not doing its job. He concludes, "Contextual features recognize that the good in health care is not just about the patient. It is about everybody involved with the patient-doctors, nurses, other providers, and family. Usually, the patient counts most, but everybody counts."
The concept that "everybody counts" would serve well as an axiom describing the multiple activities comprising the CCFAP. ICUs are a complex part of an even more complex institution, the hospital. Staffing the ICU in any hospital are men and women who are trained to perform very specialized and critical functions in an environment that has very high morbidity and mortality. Historically, critical care practitioners have their primary focus on the patient. Their orientation is to deliver outstanding care, expedite recovery, and shorten the length of stay in the ICU environment. However, on a daily basis, caregivers deal with patients who are either incommunicative or have limited ability to communicate because of the severity of their illness. This means that, frequently, family members or close friends who are emotionally invested in the patient become the surrogate decision makers. In the past, caregivers, in their efforts to address the patient’s needs, might have found themselves in an organizational structure in which, despite their best intentions, they had neither the time nor the opportunity to address the family’s needs. As a result, patient care was potentially impacted because caregivers were repeatedly dealing with the family about matters that could have been dealt with more efficiently at an earlier stage through more systematic communication. The CCFAP attempts to address multiple family needs, including communication, in such a way that it enhances trust between caregivers and family, and reduces some of the stress felt by caregivers and family.
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Focus on Being Family-Friendly
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Much of the research cited both in the first article of this supplement and in this article makes clear that if the critical care unit focuses exclusively on the patient to the exclusion of the family, it fails in its obligations to the family and possibly impairs the recovery of the patient. More recently, research has attempted to define the characteristics of an ICU with a significant orientation toward the family. Harvey,3 in an editorial, noted that a critical care unit can only be family-friendly and have a firm grip on reality when it is diligent in gathering and utilizing data, rather than relying on subjective opinion, for decisions relative to family care. The subtitle of Harvey’s editorial "Why Can’t We Just Be Decent?" indicates where the author feels emphasis should be placed. As a result, the hospitals represented in the CCFAP gather data regularly from both family members and staff. The tabulation and analysis of those data through The CHEST Foundation evaluator, Dr. Jane Dowling, President, Wellington Consulting Group, enables the participating CCFAP sites to take that information and apply it in ways that advance their individual commitment to the family. Dodek and others4 have indicated that an ICU team using a systematic, evidence-based approach to improvement will be far more likely to devise strategies that will effectively change behavior.
Outside of the CCFAP, the concept of a more family-friendly ICU has received significant notice in the popular press. In Flint, MI, the Hurley Medical Center pediatric unit has set about privatizing its 14 intensive care rooms, dedicating space for conscious sedation and for procedures such as inserting IV lines, and developing and enhancing the children’s playroom both for play and for meeting with families.5 The Indianapolis Star discussed6 a program at the Riley Hospital for Children, where parents are encouraged to play a much more active role in the treatment of their child in the pediatric ICU.
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Focus on Communication
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It is a fundamental research finding that, for families of ICU patients, communication is the critical element. The ICU is an area where communication cannot be left to chance. Families are there to support the healing process. When families are misinformed or do not receive adequate information in a timely manner, there is mistrust. When families do not feel they are getting good information about the patient, they ask themselves, "What am I not being told?," "Why are they holding back on me?," and "What are they hiding?" The general principle within the CCFAP is that one can never overcommunicate. CCFAP team members recognize that the perceptions of the other party are an essential part of communication. Even when it is thought that staff are communicating adequately and meeting the needs of the family, there are still families who feel uninformed. The CCFAP is developing a culture of caring. It is a culture in which greater emphasis is put on what is done with the families and for the families, and in which the families are told that the staff cares about them and is doing its best to anticipate and meet their needs.
Within this atmosphere of communication, the CCFAP seeks to develop all ICU staff members into a team in which ideas are frankly discussed, problems are acknowledged, and one’s status is largely ignored. If the staff can model this behavior with one another, it creates an expectation that all communication with patients and with families will be planned carefully, conducted with consideration, and is open to both positive and negative reactions from the other party. Lipkin7 notes that "communication has also been shown to influence key quality measures that relate both to care quality identified by patients and to practice success and professional satisfaction. Measures such as patient satisfaction, physician satisfaction, changing doctor or health plan, and efficiency have been used to quantify these relationships."
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Impact on End-of-Life Issues
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Hospitals currently are addressing the medical and ethical issues surrounding the end of life. The CCFAP can be an integral part of that dialogue as it opens up communication between caregivers and family, as well as communication among caregivers. A recent study in Canada by Heyland and his associates8 noted that the majority of the families of patients who had died in an ICU during the preceding year were satisfied with the end-of-life care that was provided. The central reasons cited for this satisfaction included adequate communication, good decision making, and respect and compassion shown to the dying patient. However, in commenting on this study, Puri9 noted that investigators in the United States had results that were termed "less satisfactory." Citing other studies,10 he observed that while the past 5 years have seen progress in legal and ethical discussions regarding death, many family members feel betrayed and burdened when their relative dies in an ICU. Since doctors have been trained to save lives, and each ICU has been created to make recovery possible, up to this point it has seemed to many to be a contradiction to have conversations with family about end-of-life care.
The contribution of the CCFAP at this stage makes that conversation both possible and caring. In hospitals involved in the CCFAP, core team members work closely with other groups in the hospital, such as the ethics committee, the palliative care team, the end-of-life network, and others who have addressed concerns about this critical issue. A number of physicians in CCFAP hospitals are heavily involved with the end-of-life initiatives undertaken by the American College of Chest Physicians and various medical organizations.
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Importance of Educational Tools
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Research also indicates that family-centered critical care units develop instructional tools that enable family members to understand both the nature of the patient’s illness and the type of treatment to be anticipated.1112 These tools can be as simple as pamphlets explaining the nature of a certain illness; they can encompass diagrams or pictures detailing the use of the formidable-looking devices used in the treatment of ICU patients. Providing a description of such tools is part of the developmental plan of the CCFAP, and each participating hospital develops such tools as part of an organized effort to provide useful information that informs families and relieves stress.
The educational component of the CCFAP is also presented through the utilization of a computer information kiosk that is found in or near each waiting room. Among the items of information contained therein are links to Web sites describing illnesses and their treatments, as well as a description of the type of home care that may be required when the patient is released. One hospital has developed a prototype of an animated video that will present detailed but interesting answers to key questions that are frequently asked by relatives.
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Commitment To Serve the Needs of All Families
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As hospitals do not discriminate in accepting patients into their critical care units, the family-centered ICU is equally accepting and committed to serving the families of all patients admitted to the ICU. Critical care units that serve the poor and indigent find that the families of their patients are habitually underserved, are frequently not recognized, and are largely ignored in their daily living needs in the world outside of the ICU. Even research on tending to the needs of indigent families in an intensive care setting is somewhat sparse. It is not surprising that researchers have noted that while "the vital role played by family caregivers in supporting dying patients is well recognized, the burden and economic impact on caregivers is poorly understood."13
The problems presented by the indigent are faced by all hospitals that have adopted the CCFAP. However, several of these hospitals serve urban areas and have a disproportionate number of patients in their ICU who have few, if any, resources. For these families, assistance with food, transportation, and lodging is essential for any hospital having pretensions to being family-friendly. In addition, families of the poor cannot afford babysitters, so the arrival of an entire family puts a strain on the entire system. Again, it is a problem that cannot be ignored and with which family-friendly hospitals attempt to deal. A number of CCFAP sites have made special accommodations to service these families. One ICU has set up a small play area with toys, books, and games to keep the children amused and interested. As might be expected, the working poor cannot take time away from their jobs during the day. They can only come at night and on weekends, so a family-friendly ICU makes sure that all services available to families during the day are also available in the evening. Social workers, for example, are specifically trained to deal with many of the concerns of the poor, and hospitals need to ensure that service is available at night.
At times, adopting a family-friendly attitude has appeared to some as antithetical to good health-care practice. The admission of large numbers of people to the waiting room, the expansion of visiting hours, and the relaxing of standards about who may be allowed to visit may appear to create an atmosphere contrary to the accustomed good order of a hospital. Physicians and nurses on whom the greater burdens of time and responsibility fall are more likely to feel the impact of these changes. While the CCFAP acknowledges the primacy of any activity called for by the patient’s condition, there is also a conviction that visitation of the patient is good both for the patient and the family.14 Reasonable and flexible regulations regarding visiting hours create open lines of communication and go far in establishing mutual trust.15
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Focus on Customer Satisfaction
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Many components go into forming a family-friendly environment, and each of the hospitals involved in the CCFAP is always actively involved in analyzing and discussing ways to improve the services it offers. It is only recently that the concept of customer satisfaction has slipped into the awareness of those managing critical care units. Satisfaction with care is one way of examining and measuring quality of care. While critically ill patients may be unable to participate fully in the important decisions regarding their treatment, their family can and does participate in those decisions. On the basis of that interaction between the health-care providers and family, feelings emerge either of satisfaction or dissatisfaction, and, ultimately, some judgment is made by families about the quality of care. The current era of health care has seen the rise of consumerism, shorter stays in an ICU, and frequent shortages of trained personnel. Family-centered critical care, as has been noted, is today more than just an option; it is the only response that makes medical sense.16
The hospitals served by the authors of this article have each made a commitment to the CCFAP. They recognize the importance of meeting the goal of the CCFAP, namely, to respond to the unmet needs of families of critically ill patients in hospital ICUs through the provision of educational and family support resources. As each of the hospitals involved with the CCFAP has set out to accomplish that goal, it is apparent that the coordination and delivery of care has been positively impacted. Staff members in departments throughout the hospitals have willingly accepted the challenge involved in dealing with the needs of family members and developing a structure that places high value on openness, trust, and compassion. For all CCFAP sites, there has been a greater sense of empowerment, a feeling that something that needed to be done is being implemented by the collective action of the core team, leaving permanent changes in the delivery of critical care. This new interaction between a multispecialty team of clinicians, support staff, and administrators and patients and their families is creating a new model of critical care and standards for others to emulate.
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Role of the Project Director in the CCFAP
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Many of the specific and day-to-day details of the CCFAP will be spelled out in more detail in separate sections authored by the program coordinators, the support services staffs, and the critical care nurse managers involved in the program. The task entrusted to project directors calls for them to be the facilitators within the hospital, to ensure that the goal is reached, and that the program is effectively adapted into the organizational structure of the hospital. Project directors participate in program planning, ensuring that the program plan is realistic and makes effective use of resources. They champion the program and serve as its spokesperson to their hospital administrators, to their professional peers and colleagues, and to members of the public who may have little real knowledge of the rationale and benefits of implementing the CCFAP.
The hospitals participating in the CCFAP, which are chosen to represent different models of care, are also demonstrating that this program can work in any setting. While diverse, both geographically and ethnically, these hospitals serve different patient populations, and have varied funding sources and unique organizational structures. Even the restraints and obstacles to success with the CCFAP are different. For example, all Veterans Affairs hospitals are prohibited by law from spending taxpayer funds for anyone except veterans, therefore, excluding family members. Yet, despite these differences, there is a uniform enthusiasm for this program among staff and a whole-hearted acceptance by the families being served. This is not to imply that the pilot CCFAP sites have reached a final stage of accomplishment. There are still obstacles to be overcome. Those who initially resisted the program and felt some threat to their normal functioning are being persuaded by the evidence of the efficacy of the CCFAP model. Whatever the challenges that are being faced individually or as a group to new processes and to the greater coordination of care, the enthusiasm for this program remains strong, and the momentum for its acceptance among staff members, patients, and their families continues unabated.
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Footnotes
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Abbreviation: CCFAP = Critical Care Family Assistance Program
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References
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- Azoulay, E, Pochard, P, Chevret, S, et al (2001) Meeting the needs of intensive care unit patient families. Am J Respir Crit Care Med 163,135-139[Abstract/Free Full Text]
- Burck, R Family satisfaction survey to improve the fit between the intensive care unit and its concept. Crit Care Med 2002;30,1650-1651[CrossRef][ISI][Medline]
- Harvey, MA Evidence-based approach to families in the intensive care unit: why can’t we just be decent [editorial]? Crit Care Med 2004;32,1975[CrossRef][ISI][Medline]
- Dodek, P, Heyland, D, Rocker, G, et al Translating family satisfaction data into quality improvement. Crit Care Med 2004;32,1975-1976[CrossRef][ISI][Medline]
- Kirkendoll, S Room for remembrance. The Flint Journal 2004;October 24,24-25
- Banes, T A better bedside manner: hospital staffers learn to embrace a patient’s family by sharing in their emotions. Indianapolis Star 2004;October 17,7
- Lipkin M. New findings and approaches in patient-physician communication. Proceedings of the 25th Annual Meeting of the Society of General Internal Medicine. Available at: http://medscape.com/viewarticle/437507. Accessed October 25, 2004
- Heyland, D, Rocker, G, O’Callaghan, C, et al Dying in the ICU: perspectives of family members. Chest 2003;124,392-397[Abstract/Free Full Text]
- Puri, V Death in the ICU: feelings of those left behind. Chest 2003;124,11-12[Free Full Text]
- Lynn, J, Teno, JM, Phillips, RS, et al Perspectives by family members of the dying experience of older and seriously ill patients. Ann Intern Med 1997;126,97-106[Abstract/Free Full Text]
- Petterson, M Visual tools for families: a picture is worth a thousand words. Crit Care Nurse 2000;20,96[Medline]
- Azoulay, E, Pochard, F, Chevret, S, et al Impact of a family leaflet on effectiveness of information provided to family members of intensive care unit patients: multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med 2002;165,434-435[Free Full Text]
- Grunfeld, E, Coyle, D, Whelan, T, et al Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J 2004;170,1795-1801[Abstract/Free Full Text]
- Molter, N Needs of relatives of critically ill patients: a descriptive study. Heart Lung 1979;8,332-339[ISI][Medline]
- Lynn-McHale, B, Bellinger, J Perceived satisfaction levels of family members of critical care patients and accuracy of nurses’ perceptions. Heart Lung 1998;17,447-453
- Henneman, E, Cardin, S Family-centered critical care: a practical approach to making it happen. Crit Care Nurse 2002;22,12-19[Free Full Text]
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Introduction
CCFAP Model Sites
