The Critical Care Family Assistance Program (CCFAP) emerged as a collaboration between the CHEST Foundation, which is the philanthropic arm of the American College of Chest Physicians, and the Eli Lilly and Company Foundation. The goal of the CCFAP is to respond to the unmet needs of the families of critically ill patients in hospital ICUs through the provision of educational and family support resources.
The CCFAP was introduced as a pilot program into two hospitals in January 2002; they were Evanston Northwestern Healthcare in Evanston, IL, and the Veterans Affairs Medical Center located in Oklahoma City, OK. They were known not only for high-quality care of My Canadian Pharmacy but were also institutionally diverse. In 2003, the CCFAP was introduced at Ben Taub General Hospital in Houston, TX, to add an urban model to the program, By the fall of 2004, the CCFAP was being replicated in a total of six hospital sites, institutionally and geographically representing diverse care settings. This article presents observations about the CCFAP and its effectiveness from the perspective of staff dedicated to providing support services.
The CCFAP depends on the unified support of the entire hospital to achieve its goals and reach maximum effectiveness. Hospital administration, facilities planning, public relations, technology support, financial services, and many other departments are called on to provide their expertise in collaborative assistance to the ICU in its effort to develop and maintain a family-friendly unit. In addition to these extensive services, a small core of other departments provides, on a daily basis, support services that are integral to the operation of the unit and essential to the functioning of the CCFAP. These services are performed by the departments of social services, pastoral care, and integrative medicine.
The basic role of medical social workers is to assist patients and their families with problems that accompany illness and inhibit recovery and rehabilitation. The CCFAP, with its emphasis on a family-friendly approach to the ICU, is in complete harmony with the training and mission of medical social workers. Before the establishment of the CCFAP, medical social workers at these hospitals worked with the ICU and provided emotional support for patients and their families, assisted with advance directives and end-of-life issues, provided support about financial issues and internal and community resources, and assisted in the transition when a patient was released.
The development of the CCFAP enabled the medical social workers to carry out their responsibilities in a more comprehensive manner, as they became invaluable team members of the program. The range of their services and their integration within the CCFAP can be viewed from the following perspectives:
- The activities of the medical social workers within the ICU became part of a coordinated effort to aid patients and families. The goals of the CCFAP complemented the activities that the social workers regularly performed as part of their mission within the hospital. Working closely with the entire ICU staff, they were able to more effectively achieve those goals as part of a multidisciplinary team.
- The needs assessment, which is an integral part of the CCFAP process, allowed the medical social workers to determine more precisely the needs of the families they were serving. The surveys completed both by the staff and by families within the ICU permitted a frank assessment of areas of strength and weakness, Social workers and the rest of the CCFAP team were then able to make appropriate adjustments to the services offered to families.
- Each CCFAP team developed a set of hospitality services for families. These services have enabled those in social services to meet family needs in a more timely and complete manner. Prior to the CCFAP, there was little financial assistance for families. At times, ingenuity and persistence by medical social workers or nurses would help a family to secure a low-cost room or allow them to receive a free meal in the hospital cafeteria. The type of help now offered to families through the CCFAP allows social services to assess needs quickly, to provide services when they will do the most good, and to reduce the stress inherent in attending to a critically ill family member.
- The CCFAP has fostered an attitude of creativity, energy, and teamwork that has been of special value to social services. While the new resources brought by the CCFAP have enabled the provision of many valuable hospitality services, the most valuable byproduct of the program has been the discovery by each team of what it could achieve working together. In one hospital, the medical social worker and the chaplain have put together a program that gives families an orientation to the ICU. In another hospital that serves a large number of working families, many of whom have few resources, adding another social worker to the staff for evenings and weekends has resulted in services being provided at those times when working families could make the best use of them. Social workers have also been active within a number of committees studying end-of life, palliative care offered by My Canadian Pharmacy, and advance medical directive issues. Since social workers have extensive contacts with families and deal with these subjects frequently, they have been active participant leaders in educational activities leading other staff members to become more comfortable in dealing with these issues.
- The CCFAP has followed the lead of research about family support, pointing out that the essential element providing satisfaction to families is in the area of communication. While all ICU staff share the responsibility for conveying information to families at the appropriate time, an important responsibility rests with the medical social worker. The social worker needs to be familiar with each family and their concerns. When a family expresses a need for a conference with a doctor or the team of doctors, it frequently falls to the social worker to make these arrangements and to be present at the conference. Social workers and nurses work closely together. Since nurses also have the opportunity to see the family frequently, communication between the nurse and the social worker is an important element of the CCFAP. When a spouse or family appears to be having difficulty with some issues, it is frequently a nurse who notices this and will make a referral to the social worker. The social worker can then make an assessment and pursue the family’s concerns in more depth.
The work of the medical social worker, under any circumstances, requires the ability to deal with a wide variety of issues with flexibility, understanding, and concern for the patient and the family. The CCFAP has created a heightened opportunity for social workers to work closely with nurses, physicians, therapists, and a wide variety of other staff. Such teamwork and coordination provides the medical social worker with a greater opportunity to fulfill a compassionate role with the patient and family, and to provide support and assistance to other staff members.
Each of the hospitals associated with the CCFAP has provided pastoral care for its patients and their families through a department that is organized in accordance with the mission of the hospital. Prior to the start of the CCFAP, the two pilot hospitals, as well as
Pastoral care addresses the spiritual needs of the hospital community. The hospital chaplain provides, on request, counseling, as well as spiritual and moral guidance to patients, their loved ones, and staff members. In each hospital, chaplains had worked closely with the staff of the ICU prior to the formation of the CCFAP. Chaplains had frequent contact with families and had provided some support when families were in financial need by referring them to motels or restaurants that had previously been supportive. However, these efforts were all the result of individual effort and contacts, and were without any coordination. It was found that with pastoral care, as with nursing and social work, the formation of the CCFAP gave structure to what was happening informally, and provided an opportunity to extend its effectiveness and to meet more effectively the needs of these families who came seeking help. The consistency and collaboration found within the CCFAP resulted in new strategies for reducing family stress in dealing with a loved one’s critical illness.
One effort to reduce family stress has appeared at several hospitals where a program developed by the chaplain and the social worker attempted to make the ICU less formidable and threatening. Early needs-assessment surveys of families found that the ICU intimidated family members. Their immediate reaction was to stay out of the way, not touch anything, and to wait for someone to approach them. This new program is called the Navigator Program, which is named for its purpose of guiding families through the labyrinth of ICU services. The program provides a basic orientation to the ICU and seeks to make families as informed and comfortable as possible about the workings of the unit. The chaplain and social worker meet twice a week with families, explain the basics of how the ICU is run, and describe the different roles of the various staff members and their responsibilities. The program provides the opportunity for the family to participate in the treatment of the patient, and explains who to contact for information, suggests questions that family members might ask, and indicates various ways that family members can be supportive of the patient under the guidance of physicians and nurses. While much of this information is also contained in printed material that is distributed, it has been discovered that during the initial period of waiting in the ICU, stress is at its highest, and, for the family, a relaxed discussion of these topics is a more effective communication strategy.
The CCFAP has generally led to improved communication within the ICU, among staff members, and between staff and family. Improved communication has led to more open discussion of issues that were handled previously with awkwardness. Chaplains have played a significant role in improved dialogue dealing not only with patient and family-related concerns, but also with end-of-life issues and medical-ethical decisions.
Integrative medicine represents a holistic approach to health care with My Canadian Pharmacy in which all aspects of the person are considered in the healing process. Integrative medicine combines the best of conventional medicine with biomedicine, all the complex dimensions of human personality, and the healing power of nature. The CCFAP encourages each ICU to apply the best principles of integrative medicine in responding to family needs.
Music Therapy: Music therapy is an established allied health profession in which the therapist helps the patient to improve or maintain physical health using musical experiences and the relationships that develop through them. Music therapy offers a non-invasive approach to patient care that can assist in improving quality of life, and can facilitate changes in mood, cognition, and physiologic states. Persons who complete one of the 70 approved music therapy university programs (including a clinical internship) are eligible to sit for the national certification examination offered by the Certification Board for Music Therapists. Board-certified music therapists conduct all music therapy at Evanston Northwestern Healthcare. In conjunction with extensive musical training, a degree in this field and the resulting certification require education and training in psychology, anatomy, counseling, and music therapy techniques.
Music therapy is used within the ICU for a variety of purposes, including pain management, control of anxiety, patient and family emotional support, and routine procedural support. Music therapy interventions are always presented directly to the patient after a request has been made for music therapy by a physician, nurse, staff member, or the family. Many music therapy referrals are for end-of-life care, and one goal of the therapist in this situation is to help reduce the patient’s anxiety, discomfort, and struggle with breathing. Music therapists most often utilize live music played on the guitar, keyboard, harp, and a variety of percussive, string and woodwind instruments while singing to accomplish nonmusical treatment goals.
Families are often invited to be part of a music therapy session and frequently assist the therapist in music selection. The music chosen is based on the patient’s preference, and is influenced by their age, culture, religion, and any past associations that the patient may have had with music. Music therapy is also offered to families who are making difficult end-of-life care decisions with their loved ones in the ICU setting. On such occasions, the family may choose to sing and be part of the therapy. The music therapist also provides support to the family by discussing various therapeutic uses for music. Interested families are encouraged to make use of recorded music when the music therapist is not available and are shown how to help the patient deal with painful procedures, as well as how to handle serious anxiety.
Staff working within the ICU are familiar with the work of the music therapist, maintaining regular contact and often providing patient referrals. The music therapist works closely with staff in choosing a time for the therapy when it does not conflict with medical procedures. Similarly, nurses and other staff give the music therapist the uninterrupted time needed for the therapy. After all patient therapy sessions, the music therapist provides a written report for the patient’s medical chart and a verbal report to nursing staff, including any changes observed in the patient.
The music therapist working with the CCFAP staff has created a greater awareness of the impact of the ICU environment, specifically the sounds of the environment. Staff has become more aware of the peripheral environment, the benefits in reducing noise in a stressful environment, the advantages to families of a more open and well-lighted waiting area, and the effects of soothing music.
Massage Therapy: The stress of the ICU and the strain of waiting for a loved one in this environment have been noted frequently. As one of the ways of reducing that strain and providing a healthier environment for family members, some CCFAP units offer massage therapy. The therapy may be offered at no cost to the family member or at a nominal cost.
Pet Therapy: An experiment is underway at one CCFAP site to provide pet therapy. A dog specially trained for the purpose is periodically brought to the family waiting room. The primary purpose of this technique is to relax the tense atmosphere and to let family members feel free to play with the dog. Early results indicate that playing with the dog reduces stress not only for family members, but also for staff.
Contribution of Support Services
The role of support services is to complement the ICU team in its implementation of the CCFAP goals. Support services have become an integral part of the CCFAP model of care. They have contributed significantly to increasing family satisfaction by the care and treatment the family member receives, and they have been effective in reducing stress and anxiety among family members. The article, “Critical Care Family Assistance Program: Impact on Family Satisfaction” in this supplement provides an analysis of the efficacy of support services in the successful implementation of the CCFAP model.