Objective: To evaluate the Advanced Illness Coordinated Care Program (AICCP), delivered by allied health personnel to improve care for patients coping with advanced illness and in need of preparation for end-of-life (EOL) care.
Study Design: Clinical trial involving 275 patients and 143 surrogates in 6 settings who were randomly assigned to the AICCP or usual care (UC).
Methods: The AICCP participants met with a care coordinator for assistance with provider communication, care coordination, and support. The AICCP was evaluated for effects on satisfaction with care, advance planning, consistency of care with patient preferences, and healthcare costs.
Results: The AICCP increased patient satisfaction with care and communication (P = .03), and AICCP surrogates reported fewer problems with provider support (P = .03). More AICCP than UC participants completed an advance directive (AD) (69.4% vs 48.4%; P = .006), and the AICCP group completed more ADs per participant (P = .01). Median time to AD documentation was 46 days for AICCP and 238 days for UC (P = .02). There was no difference in survival (AICCP 43% vs UC 42%). Six-month costs were lower with AICCP than with UC ($12 123 vs $16 295); however, the difference did not reach statistical significance.
Conclusions: The AICCP improved satisfaction with care and helped patients develop and revise more ADs, sooner, without affecting mortality. This program may be delivered in a range of managed care, fee-for-service, and group-model settings.
(Am J Manag Care. 2006;12:93-100)
The need to improve the care of patients coping with advanced illness and preparing for end-of-life (EOL) care is well documented. Shortcomings in the medical, psychological, spiritual, and practical domains of care have been described by experts1 and researchers.2 Many Americans are dying subsequent to unwanted care, in unrelieved pain, and with their preferences for treatment inadequately discussed, documented, and followed.1,3,4 Care at the EOL often is fragmented because it is delivered by different providers in different settings.
For these reasons, the quality of life of many people with serious illness is compromised. These shortcomings will eventually affect more Americans: more than 73% of deaths occur after age 65 years, and this age group is projected to increase as the baby-boom cohort enters old age.5 Because of importance of delivering improved care, the Institute of Medicine recommends conducting research on the utility of new care strategies.1
The demands of the aging baby-boom generation for more input and better treatment during advanced illness are mobilizing efforts to improve EOL care.6 Recent efforts to improve care include the development of Palliative Care Leadership Centers,7 hospice consultation teams,8 hospital-based palliative care teams,9 and prehospice and care management programs.10 In addition, greater attention is being paid to EOL care in medical training and practice,10 and to development of models for facilitating structured EOL discussions, including interventions that focus on advance planning.11-15
The Advanced Illness Coordinated Care Program (AICCP) was developed to improve the care of people with serious illness.16 It is a care coordination and support program delivered by allied health providers (eg, nurses, social workers) as a part of physician-directed care plans. The AICCP is designed to promote communication and understanding between patients and providers about advanced illness and EOL issues to promote health literacy, to achieve coordination of care, to provide emotional and social support, and to reduce barriers to the use of palliative care and hospice services. AICCP can be delivered in acute-care, primary care, or long-term care settings and as a component of disease management or case management services. It is delivered concurrently while patients are receiving life-prolonging treatments and before referral to specialty palliative services.
The development of AICCP was guided by clinical experience,17 previous outcome studies,2 and recommendations for improving care coordination and support from the health literature and the managed care industry.17-19 AICCP is designed to address reported barriers to quality care,20 like readiness to prepare for EOL care.21 AICCP uses proactive strategies explicitly designed to promote readiness.
To test the effectiveness of AICCP for helping people cope with advanced illness and EOL decisions and to ascertain the program utility from quality and cost perspectives, we conducted a randomized, controlled trial comparing AICCP patients and surrogates with patients and surrogates receiving usual care (UC). We describe the impact of the AICCP on patient and surrogate satisfaction with healthcare and provider communication, formulation and development of advance directives (ADs), whether the received medical care was consistent with the patient's AD, and healthcare costs.
DESIGN AND METHODS
Participants were recruited from 3 Department of Veterans Affairs medical centers (VAMCs), a home care organization, and 2 managed care organizations. Patients had chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), or cancer diagnoses including those of the esophagus, trachea, colon, liver, pancreas, lung, or uterus; cancers of the prostate or breast with metastasis; and melanoma, leukemia, lymphosarcoma, Hodgkin's disease, or multiple myeloma. Patients with COPD or CHF were eligible if they had experienced 1 or more admissions to an intensive-care unit or 2 or more acute-care admissions in the last 6 months.
Table 1 shows demographic information on patients. Table 2 shows demographic information on surrogates.
The study protocol was approved by institutional review boards at each site. Recruiters blinded to group assignment enrolled 275 patients. We used Research Randomizer version 322 to randomize participants in blocks of 10 into AICCP (n = 133) or UC (n = 142). Approximately 60% of the patients identified a surrogate, of which 168 (76 in the AICCP group and 92 in the UC group) agreed to participate.
One hundred eighty-six patients (AICCP = 86, UC = 100) and 143 surrogates (AICCP = 67, UC = 76) completed the study and a follow-up assessment at approximately 3 months postenrollment. The AICCP was gradually implemented as part of UC in some VAMC inpatient units before study closure. Therefore, as specified in the institutional review board approval, patients were free to cross over to the alternative treatment arm in spite of their randomization status because administrators wanted to make AICCP available on units where AICCP was introduced into UC and participants requested AICCP. Eighteen UC participants crossed over to AICCP, and 2 AICCP participants crossed into UC. Intention-to-treat analyses were performed with participants in their originally assigned groups.23
The AICCP delivers care coordination and support through 6 functions. The first is physician support, which consists of helping patients develop well-organized questions to make economical use of provider time and ensuring that physicians have complete information about patients. The second is health literacy, which is the capacity to understand basic health information.24 The AICCP addresses literacy concerns in each session (eg, by helping patients comprehend specialized medical terminology, which both increases their understanding and reduces their embarrassment). The third function is care coordination, which is locating and arranging linkages to medical services. The fourth is prevention, which refers to a focus on those aspects of EOL planning that often are avoided and emotionally charged. In this study, prevention referred to efforts to reduce or eliminate common psychosocial concerns related to advanced illness such as (1) coping with the loss of ability to perform valued activities; (2) identifying and addressing family conflict around difficult advanced illness and EOL decisions (eg, patient relocation, financial burdens of illness); (3) avoiding caregiver burnout (eg, by dividing care among family members); (4) anticipating emotional reactions (eg, anticipatory grief, fear of death); (5) enhancing self-management skills by preparing patients and families to cope with health system delivery shortfalls (eg, fragmentation of care delivery, gaps in care); and (6) promoting advance planning, because timely planning may avert decision making in crisis situations.11
Care coordinators help clarify patient preferences for care under different health scenarios, using worksheets designed for this purpose.14 If patients engage in advance planning, care coordinators assist them in formulating and documenting ADs and discussing them with providers. Family misunderstandings about care issues frequently can be resolved during meetings with care coordinators, reducing physician time spent mediating between family members. Care coordinators also provide emotional and social support. Emotional support consists of attending to affective components of illness, identifying specific emotions, helping patients cope with suffering, and providing referrals for ongoing counseling. Social support includes guidance and information, as well as tangible support. In the AICCP, structured guidance support helps patients and caregivers complete tasks needed to maintain health and function.25 The AICCP provides information support in the form of guiding patients through the immense amount of medical information available to sources that are (1) adjusted for health literacy, (2) endorsed by their physicians, and (3) relevant to their situations. It provides tangible support by locating and arranging social support services. These functions are performed by nurses, nurse practitioners, or social workers.