The Critical Care Family Assistance Program
2005; Elsevier BV; Volume: 128; Issue: 3 Linguagem: Inglês
10.1016/s0012-3692(15)52123-5
ISSN1931-3543
Autores Tópico(s)Palliative Care and End-of-Life Issues
ResumoThe call comes that a spouse, a son, a daughter, a parent, or another loved-one is critically ill or seriously injured and has been admitted to the ICU. The hospital is not a familiar place, and the sights, sounds, and smells of the ICU remind one that within this intimidating place, lives hang in balance. Although the doctors and nurses are kindhearted and competent, news of progress is infrequent, often fragmented, and at times conflicting. The waiting room is wanting, with little privacy for conversation or to collect one’s thoughts. There is the murmur of hushed conversation, punctured by occasional sounds of grieving or forced levity. Soon the battle is apparently turning: the threat of the immediately life-threatening illness has lessened. However, the protracted campaign of chronic critical illness, with new enemies such as nosocomial infections, emerges, taxing one’s endurance and willpower. Sleep is scarce and fragmented, and diet consists of coffee and fast food. Mail piles up, and calls go unreturned. Simple joys are not nearly as simple nor as joyful. Gut-wrenching decisions about critical issues must be made and often provoke emotional conflict and second guessing, both internally and among the collective family. Usually, there eventually is sufficient recovery for graduation from the ICU to new challenges, but often the devastating loss of this beloved one occurs despite the efforts and anguish of many.Life as the family member of an ICU patient is never easy and is often one of most difficult, traumatic events encountered. The intense stress and, in some cases, subsequent anxiety, depression, and posttraumatic stress disorder experienced by ICU patients’ families is well documented, particularly for bereaved family members who suffer the death of a loved one.1Azoulay E Pochard F Kentish-Barnes N et al.Risk of posttraumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994Crossref PubMed Scopus (893) Google Scholar, 2Pochard F Azoulay E Chevret S et al.Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity.Crit Care Med. 2001; 29: 1893-1897Crossref PubMed Scopus (521) Google Scholar, 3Jones C Skirrow P Griffiths RD et al.Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care.Intensive Care Med. 2004; 30: 456-460Crossref PubMed Scopus (241) Google Scholar Of the many clinicians and hospital personnel involved in the care of these critically ill patients, most are well aware of the extreme stress and hardship the family members endure. These workers provide support and comfort in many ways, yet rarely through an organized multidisciplinary approach.What are the needs of ICU patients’ families? All care providers who work with these wanting individuals understand they need emotional support, understanding, kindness, honesty, and the exchange of information that is timely, consistent, and understandable. A series of investigations have led to formulation of the Critical Care Family Needs Inventory and subsequent modified versions that have been validated.4Molter NC Needs of relatives of critically ill patients: a descriptive study.Heart Lung. 1979; 8: 332-339PubMed Google Scholar, 5Leske JS Internal psychometric properties of the Critical Care Family Needs Inventory.Heart Lung. 1991; 20: 236-244PubMed Google Scholar, 6Bijttebier P Delva D Vanoost S et al.Reliability and validity of the Critical Care Family Needs Inventory in a Dutch-speaking Belgian sample.Heart Lung. 2000; 29: 278-286Abstract Full Text Full Text PDF PubMed Scopus (68) Google Scholar These documents, and other research, focus on five categories of family need: need for information, need for comfort, need for support, need for assurance and anxiety reduction, and need for proximity and accessibility. Family satisfaction surveys consistently reveal communication, particularly with physicians, as the single most important determinant of satisfaction.7Heyland DK Rocker GM Dodek PM et al.Family satisfaction with care in the intensive care unit: results of a multiple center study.Crit Care Med. 2002; 30: 1413-1418Crossref PubMed Scopus (322) Google Scholar The impact of the quality of information exchange between clinicians and families extends beyond family satisfaction, however. Recent research links inadequate information exchange and communication, along with participation in end-of-life discussions, with high likelihood of posttraumatic stress disorder among ICU family members.1Azoulay E Pochard F Kentish-Barnes N et al.Risk of posttraumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994Crossref PubMed Scopus (893) Google Scholar It is not merely the volume of information; posttraumatic stress disorder among family members was more frequent when they judged the information to be difficult to understand, or incomplete, or if information time was insufficient.1Azoulay E Pochard F Kentish-Barnes N et al.Risk of posttraumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994Crossref PubMed Scopus (893) Google Scholar Adequate information is perhaps most important in the context of end-of-life discussions, as it also empowers family members for participation in shared decision making.8Rabow MW Hauser JM Adams J Supporting family caregivers at the end of life: “they don’t know what they don’t know.”.JAMA. 2004; 291: 483-491Crossref PubMed Scopus (330) Google Scholar, 9Truog RD Cist AF Brackett SE et al.Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine.Crit Care Med. 2001; 29: 2332-2348Crossref PubMed Scopus (367) Google ScholarDespite the widespread recognition of the intense stress and dissatisfaction experienced by ICU families, as well as a sense for the needs of families and anecdotal experience by clinicians, there are relatively few documented comprehensive programs for improving the plight of ICU families. Most strategies have a relatively narrow focus, generally directed to means of improving communication, such as utilization of pamphlets, diaries of events, and expanded use of hospital volunteers.10Appleyard ME Gavaghan SR Gonzalez C et al.Nurse-coached intervention for the families of patients in critical care units.Crit Care Nurse. 2000; 20: 40-48PubMed Google Scholar, 11Backman CG Walther SM Use of a personal diary written on the ICU during critical illness.Intensive Care Med. 2001; 27: 426-429Crossref PubMed Scopus (130) Google Scholar Implementation of an intensive communication program that focuses on highly structured and early family communication has been demonstrated to aid in decision-making regarding the use of advanced supportive technology vs palliative care, and was associated with a sustained reduction in ICU length of stay in one setting.12Lilly CM De Meo DL Sonna LA et al.An intensive communication intervention for the critically ill.Am J Med. 2000; 109: 469-475Abstract Full Text Full Text PDF PubMed Scopus (404) Google Scholar, 13Lilly CM Sonna LA Haley KJ et al.Intensive communication: four-year follow-up from a clinical practice study.Crit Care Med. 2003; 31: S394-S399Crossref PubMed Google Scholar Expert recommendations for improving the care for ICU patients’ families embrace open communication, shared decision making, providing family support, improving family access to the patient, and development of improved communication skills among clinicians.14Kirchhoff KT Song MK Kehl K Caring for the family of the critically ill patient.Crit Care Clin. 2004; 20: 453-466Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar, 15Azoulay E Sprung CL Family-physician interactions in the intensive care unit.Crit Care Med. 2004; 32: 2323-2328Crossref PubMed Scopus (122) Google ScholarThe Supplement to this issue of CHEST on the Critical Care Family Assistance Program (CCFAP) contains a series of articles that detail the background, goals and objectives, and results of the implementation of a novel program designed to systematically and comprehensively improve the well-being of the families of ICU patients. Based on a needs assessment performed by leadership of the CHEST Foundation (the philanthropic arm of The American College of Chest Physicians) and through the generous research funding from the Eli Lilly and Company Foundation, the CCFAP was developed (Lederer et al16Lederer MA Goode T Dowling J Origins and development: The Critical Care Family Assistance Program.Chest. 2005; 128(suppl): 65S-75SAbstract Full Text Full Text PDF Scopus (36) Google Scholar). The stated goal of the CCFAP is to “respond to the unmet needs of families of critically ill patients in hospital ICUs through the provision of educational and family support resources.” Increased communication, improved support systems, and a friendlier physical environment are principles on which the CCFAP was created. Key components of the CCFAP generally fall within the following areas: communication, environmental changes, education and information materials, information kiosk, hospitality program, and other services. Specific examples of widely ranging activities include the following: establishing specific individuals tasked with optimizing communications with families, adding telephones to waiting rooms or providing cell phones or pagers, repainting and re-furnishing waiting rooms, creating family consultation rooms for family conferences, developing instructional brochures, hospital maps, and contact information, and establishing an easy-to-use computer information kiosk. The needs of families who have traveled great distances are further met through negotiated lower rates at nearby hotels, ensuring meals are available and affordable, and arranging for discounted car rental and vouchers for taxicab service, among other activities. Although these are tangible things, it is clear from the reports published in the Supplement and from conversations with participants that some of the greatest gains are in the interdisciplinary groundswell of support and the overwhelming spirit of caring that emerges.The CCFAP also constitutes, in essence, a series of demonstration projects in which the program is established at multiple sites, which have been selected because of their diverse patient populations and hospital settings. For example, ICUs in hospitals from urban, rural, and suburban locales, as well as academic, teaching, Veterans Affairs, community, and other settings, were selected. This rich variety lends credibility to the concept that all ICU families can be helped, and that the program is portable and can be broadly applied. The reflections of a wide variety of key individuals regarding the CCFAP experience at their institution are contained in the Supplement. Finally, a carefully crafted “Replication Toolkit” has been developed to assist those interested in establishing a CCFAP at their hospital. This combination of written and electronic (compact disk) material is organized to provide a step-wise approach to the challenge of establishing such a program, complete with numerous practical tips on implementation.Every day, thousands of families find themselves struggling mightily to deal with the many emotional and practical challenges of living with a critically ill loved one in the ICU. There are also thousands of concerned physicians, nurses, social workers, clergy, administrators, and others who recognize these needs and strive to provide support in many ways. The CCFAP is a unique and comprehensive approach that has been carefully conceived, developed, implemented, and re-evaluated at a broad range of hospitals. The program embraces continual learning and sharing of ideas, and the resulting replication toolkit, as well as availability of current participants for advice, builds a framework on which clinicians and other hospital workers can build a program that helps meet the needs of our ICU families. The CCFAP is a tangible extension of patient-focused care,17Irwin RS Patient-focused care: the 2003 American College of Chest Physicians Convocation Speech.Chest. 2004; 125: 1910-1912Abstract Full Text Full Text PDF PubMed Scopus (11) Google Scholar applied to those who most directly support patients: their families and loved ones. Let’s all lift our support to this next level. The call comes that a spouse, a son, a daughter, a parent, or another loved-one is critically ill or seriously injured and has been admitted to the ICU. The hospital is not a familiar place, and the sights, sounds, and smells of the ICU remind one that within this intimidating place, lives hang in balance. Although the doctors and nurses are kindhearted and competent, news of progress is infrequent, often fragmented, and at times conflicting. The waiting room is wanting, with little privacy for conversation or to collect one’s thoughts. There is the murmur of hushed conversation, punctured by occasional sounds of grieving or forced levity. Soon the battle is apparently turning: the threat of the immediately life-threatening illness has lessened. However, the protracted campaign of chronic critical illness, with new enemies such as nosocomial infections, emerges, taxing one’s endurance and willpower. Sleep is scarce and fragmented, and diet consists of coffee and fast food. Mail piles up, and calls go unreturned. Simple joys are not nearly as simple nor as joyful. Gut-wrenching decisions about critical issues must be made and often provoke emotional conflict and second guessing, both internally and among the collective family. Usually, there eventually is sufficient recovery for graduation from the ICU to new challenges, but often the devastating loss of this beloved one occurs despite the efforts and anguish of many. Life as the family member of an ICU patient is never easy and is often one of most difficult, traumatic events encountered. The intense stress and, in some cases, subsequent anxiety, depression, and posttraumatic stress disorder experienced by ICU patients’ families is well documented, particularly for bereaved family members who suffer the death of a loved one.1Azoulay E Pochard F Kentish-Barnes N et al.Risk of posttraumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994Crossref PubMed Scopus (893) Google Scholar, 2Pochard F Azoulay E Chevret S et al.Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity.Crit Care Med. 2001; 29: 1893-1897Crossref PubMed Scopus (521) Google Scholar, 3Jones C Skirrow P Griffiths RD et al.Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care.Intensive Care Med. 2004; 30: 456-460Crossref PubMed Scopus (241) Google Scholar Of the many clinicians and hospital personnel involved in the care of these critically ill patients, most are well aware of the extreme stress and hardship the family members endure. These workers provide support and comfort in many ways, yet rarely through an organized multidisciplinary approach. What are the needs of ICU patients’ families? All care providers who work with these wanting individuals understand they need emotional support, understanding, kindness, honesty, and the exchange of information that is timely, consistent, and understandable. A series of investigations have led to formulation of the Critical Care Family Needs Inventory and subsequent modified versions that have been validated.4Molter NC Needs of relatives of critically ill patients: a descriptive study.Heart Lung. 1979; 8: 332-339PubMed Google Scholar, 5Leske JS Internal psychometric properties of the Critical Care Family Needs Inventory.Heart Lung. 1991; 20: 236-244PubMed Google Scholar, 6Bijttebier P Delva D Vanoost S et al.Reliability and validity of the Critical Care Family Needs Inventory in a Dutch-speaking Belgian sample.Heart Lung. 2000; 29: 278-286Abstract Full Text Full Text PDF PubMed Scopus (68) Google Scholar These documents, and other research, focus on five categories of family need: need for information, need for comfort, need for support, need for assurance and anxiety reduction, and need for proximity and accessibility. Family satisfaction surveys consistently reveal communication, particularly with physicians, as the single most important determinant of satisfaction.7Heyland DK Rocker GM Dodek PM et al.Family satisfaction with care in the intensive care unit: results of a multiple center study.Crit Care Med. 2002; 30: 1413-1418Crossref PubMed Scopus (322) Google Scholar The impact of the quality of information exchange between clinicians and families extends beyond family satisfaction, however. Recent research links inadequate information exchange and communication, along with participation in end-of-life discussions, with high likelihood of posttraumatic stress disorder among ICU family members.1Azoulay E Pochard F Kentish-Barnes N et al.Risk of posttraumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994Crossref PubMed Scopus (893) Google Scholar It is not merely the volume of information; posttraumatic stress disorder among family members was more frequent when they judged the information to be difficult to understand, or incomplete, or if information time was insufficient.1Azoulay E Pochard F Kentish-Barnes N et al.Risk of posttraumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994Crossref PubMed Scopus (893) Google Scholar Adequate information is perhaps most important in the context of end-of-life discussions, as it also empowers family members for participation in shared decision making.8Rabow MW Hauser JM Adams J Supporting family caregivers at the end of life: “they don’t know what they don’t know.”.JAMA. 2004; 291: 483-491Crossref PubMed Scopus (330) Google Scholar, 9Truog RD Cist AF Brackett SE et al.Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine.Crit Care Med. 2001; 29: 2332-2348Crossref PubMed Scopus (367) Google Scholar Despite the widespread recognition of the intense stress and dissatisfaction experienced by ICU families, as well as a sense for the needs of families and anecdotal experience by clinicians, there are relatively few documented comprehensive programs for improving the plight of ICU families. Most strategies have a relatively narrow focus, generally directed to means of improving communication, such as utilization of pamphlets, diaries of events, and expanded use of hospital volunteers.10Appleyard ME Gavaghan SR Gonzalez C et al.Nurse-coached intervention for the families of patients in critical care units.Crit Care Nurse. 2000; 20: 40-48PubMed Google Scholar, 11Backman CG Walther SM Use of a personal diary written on the ICU during critical illness.Intensive Care Med. 2001; 27: 426-429Crossref PubMed Scopus (130) Google Scholar Implementation of an intensive communication program that focuses on highly structured and early family communication has been demonstrated to aid in decision-making regarding the use of advanced supportive technology vs palliative care, and was associated with a sustained reduction in ICU length of stay in one setting.12Lilly CM De Meo DL Sonna LA et al.An intensive communication intervention for the critically ill.Am J Med. 2000; 109: 469-475Abstract Full Text Full Text PDF PubMed Scopus (404) Google Scholar, 13Lilly CM Sonna LA Haley KJ et al.Intensive communication: four-year follow-up from a clinical practice study.Crit Care Med. 2003; 31: S394-S399Crossref PubMed Google Scholar Expert recommendations for improving the care for ICU patients’ families embrace open communication, shared decision making, providing family support, improving family access to the patient, and development of improved communication skills among clinicians.14Kirchhoff KT Song MK Kehl K Caring for the family of the critically ill patient.Crit Care Clin. 2004; 20: 453-466Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar, 15Azoulay E Sprung CL Family-physician interactions in the intensive care unit.Crit Care Med. 2004; 32: 2323-2328Crossref PubMed Scopus (122) Google Scholar The Supplement to this issue of CHEST on the Critical Care Family Assistance Program (CCFAP) contains a series of articles that detail the background, goals and objectives, and results of the implementation of a novel program designed to systematically and comprehensively improve the well-being of the families of ICU patients. Based on a needs assessment performed by leadership of the CHEST Foundation (the philanthropic arm of The American College of Chest Physicians) and through the generous research funding from the Eli Lilly and Company Foundation, the CCFAP was developed (Lederer et al16Lederer MA Goode T Dowling J Origins and development: The Critical Care Family Assistance Program.Chest. 2005; 128(suppl): 65S-75SAbstract Full Text Full Text PDF Scopus (36) Google Scholar). The stated goal of the CCFAP is to “respond to the unmet needs of families of critically ill patients in hospital ICUs through the provision of educational and family support resources.” Increased communication, improved support systems, and a friendlier physical environment are principles on which the CCFAP was created. Key components of the CCFAP generally fall within the following areas: communication, environmental changes, education and information materials, information kiosk, hospitality program, and other services. Specific examples of widely ranging activities include the following: establishing specific individuals tasked with optimizing communications with families, adding telephones to waiting rooms or providing cell phones or pagers, repainting and re-furnishing waiting rooms, creating family consultation rooms for family conferences, developing instructional brochures, hospital maps, and contact information, and establishing an easy-to-use computer information kiosk. The needs of families who have traveled great distances are further met through negotiated lower rates at nearby hotels, ensuring meals are available and affordable, and arranging for discounted car rental and vouchers for taxicab service, among other activities. Although these are tangible things, it is clear from the reports published in the Supplement and from conversations with participants that some of the greatest gains are in the interdisciplinary groundswell of support and the overwhelming spirit of caring that emerges. The CCFAP also constitutes, in essence, a series of demonstration projects in which the program is established at multiple sites, which have been selected because of their diverse patient populations and hospital settings. For example, ICUs in hospitals from urban, rural, and suburban locales, as well as academic, teaching, Veterans Affairs, community, and other settings, were selected. This rich variety lends credibility to the concept that all ICU families can be helped, and that the program is portable and can be broadly applied. The reflections of a wide variety of key individuals regarding the CCFAP experience at their institution are contained in the Supplement. Finally, a carefully crafted “Replication Toolkit” has been developed to assist those interested in establishing a CCFAP at their hospital. This combination of written and electronic (compact disk) material is organized to provide a step-wise approach to the challenge of establishing such a program, complete with numerous practical tips on implementation. Every day, thousands of families find themselves struggling mightily to deal with the many emotional and practical challenges of living with a critically ill loved one in the ICU. There are also thousands of concerned physicians, nurses, social workers, clergy, administrators, and others who recognize these needs and strive to provide support in many ways. The CCFAP is a unique and comprehensive approach that has been carefully conceived, developed, implemented, and re-evaluated at a broad range of hospitals. The program embraces continual learning and sharing of ideas, and the resulting replication toolkit, as well as availability of current participants for advice, builds a framework on which clinicians and other hospital workers can build a program that helps meet the needs of our ICU families. The CCFAP is a tangible extension of patient-focused care,17Irwin RS Patient-focused care: the 2003 American College of Chest Physicians Convocation Speech.Chest. 2004; 125: 1910-1912Abstract Full Text Full Text PDF PubMed Scopus (11) Google Scholar applied to those who most directly support patients: their families and loved ones. Let’s all lift our support to this next level.
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