• End-of-Life Communication
• Critical Care

• Program to Improve Communication about End-of-Life Care among African American Patients

• An Exploration of the Illness Trajectory after the Onset of Chronic Lung Rejection

Song, M.

07/01/05 – 06/30/07

CRDF

Program to Improve Communication about End-of-Life Care among

African American Patients

Despite the increasing emphasis placed on patient-clinician communication about end of life care, efforts to guide the patient to make an informal end-of-life treatment decision often fail.  Past efforts to enhance end-of-life discussions were insufficient to create treatment decisions for his/her loved one when required to guide care.  The importance of effective end-of-life discussions has been documented extensively, yet systematic explorations of the effects of such dialogue with African Americans are nearly absent from the literature.  The proposal study is designed to test the ability of an hour-long intervention, Patient-Centered Advanced Care Planning (PC-ACP), to enhance clinicians’ communication about end-of-life care with African American patients with End-Stage Renal Disease (ESRD) and their surrogates.  The specific aims are

(1) to evaluate the feasibility and acceptability of PC-ACP among African American patients with ESRD and their surrogate decision makers,

(2) to examine the preliminary effects of PC-ACP on patient and surrogate outcomes compared to usual care at one week after intervention.  These outcomes include patient outcomes (perceived quality of patient-clinician communication, difficulty in making choices, and the patients’ psychosocial/spiritual well-being) and patient-surrogate congruence in goals of care,

(3) to describe the concerns of African American patients with ESRD about the end-of-life decision making process expressed during the PC-ACP intervention, and

(4) to describe the nurse-interventionist’s responses to African American patients (e.g., talking time and empathic communication) during the PC-ACP intervention.  A randomized, controlled, pre and post study will be conducted. 

Subjects (patient-surrogate dyads) will be randomized to a PC-ACP intervention of usual care control group.  Data to assess feasibility, clinical and sociodemographic data, and baseline measures of patient and surrogate outcomes will be collected when subjects enter the study.  Measures of the patient and surrogate outcomes and data to assess acceptability of the intervention will be administered at one week follow up.  Findings from this study are critical to strengthening PA-ACP and designing a randomized controlled trial to test its efficacy in improving the quality of patient-clinician communication and the quality of decision making for future medical care with a diverse sample.

Song, M.

2005-2006

CRE Pilot Study                                               

An Exploration of the Illness Trajectory after the Onset of

Chronic Lung Rejection

Transplantation has become a viable treatment option for patients with end-stage lung disease.  Although lung transplantation is a widely used modality, the long-term outcomes of this procedure are limited.  One, three, and five year actuarial survival rates are 74%, 58%, and 47%, respectively, for the poorer rates of long-term allograft and patient survival.  Currently, post-transplant management largely focuses on aggressive immunosuppression to prevent allograft rejection, antimicrobials to prevent opportunistic infections, and surveillance programs to detect and treat complications after transplant.  To date, these approaches have not been successful in preventing the pervasive complication of chronic rejection.  With the exception of retransplantation, which has a survival rate of less that 50% at one year, is costly and further depletes the scarce donor supply, there are no curative treatment options for chronic rejection. 

There may be transient improvement in allograft function following high-dose corticosteroids or cytolytic agents; however, typically these treatments appear to only slow the inevitable rate of decline.  Compare to a survival rate of >80% at four years in lung recipients without chronic rejection, the overall mortality rate following the onset of chronic rejection is 40% within two years of diagnosis.  In addition to reduced survival, the development of chronic rejection of the lung allograft is associated with a decrease in health-related quality of life.  In spite of its ominous impact on morbidity and mortality, little is known about the decision-making dilemmas that arise, nor the health care resources consumed, as the allograft fails, treatment options wane, and recipients experience the final stages of their illness. 

The lack of such work is striking since chronic rejection is ultimately refractory to treatment, produces inexorable declines in allograft function, and predictably limits the quality of life.  A better understanding of the illness trajectory during the final stages (from the onset of chronic rejection to death) would help recipients, families, and clinicians avert decision-making crises by anticipating the choices they are likely to face as their health declines, such as seeking retransplant, initiating life-support treatments, withdrawing treatments deemed futile, or forgoing heroic measures and opting for palliative care.  Therefore, the aim of the study is to examine the illness trajectories of lung recipients (pattern of morbidity, mortality, and health resource utilization) during their final stages.  The research questions that will be addressed in this study are:

1.       What is the pattern of morbidity, mortality, and health resource utilization over time from the onset of chronic rejection until death after lung transplantation?

2.       What are the relationships among morbidity, mortality, and health resource utilization from the onset of chronic rejection until death after lung transplantion?