A growing number of older Veterans are initiating chronic dialysis. These patients have a high burden of co-morbidity and very limited life expectancy after dialysis initiation. As they approac the end of their lives, many will follow a pattern of escalating healthcare utilization and costs. During the final month of life, elderly US dialysis patients spend an average of almost 10 days in the hospital, almost half are admitted to the intensive care unit and almost one third undergo an intensive procedure intended to prolong life such as intubation, feeding tube placement or cardiopulmonary resuscitation. These highly intensive patterns of end-of-life care seem to be driven much more by physician practices than by patient preferences: available data suggest that most patients with advanced kidney disease do not wish to receive interventions that prolong the dying process and would prefer to die at home or in a hospice rather than in the hospital. Thus contemporary patterns of end-of-life care among older dialysis patients may be out of step with patient preferences and values. Advance care planning (ACP) is the process whereby patients engage in discussions with their families and providers about their treatment preferences in the event of a serious life-threatening illness. Most prior studies of ACP in patients with kidney disease have focused on advance directives (which are only one aspect the ACP process), have been conducted at the level of the dialysis facility (and thus have included only dialysis patients), and have been cross-sectional in nature (and thus have not provided information on outcomes). A facilitated disease-specific approach to ACP has been proposed for patients with chronic illness, and has been shown to promote end-of-life care that is more congruent with patient preferences in select populations, including patients receiving chronic dialysis. To our knowledge facilitated patient-centered advance care planning has not been applied to patients with earlier stages of kidney disease who are approaching the need for chronic dialysis. In these patients, there might be an important opportunity for synergy between advance care planning and chronic disease management: framing decisions related to dialysis initiation within a broader context of ACP while grounding abstract discussions about ACP in real-world treatment decisions that arise in the course of advanced kidney disease. A facilitated disease-specific approach to ACP among elderly Veterans with advanced kidney disease could be effective in aligning end-of-life care practices with patient goals and preferences. The goal o this proposal will be to collect quantitative and qualitative data that will be used to tailor a facilitated patient-centered model of ACP to older Veterans with advanced kidney disease. We propose three study aims: 1) to develop a comprehensive national database of Veterans aged 70 years and older with advanced kidney disease that will provide information on clinical outcomes and contemporary ACP practices in this population. This quantitative aim will provide information on contemporary ACP practices among older Veterans with advanced kidney disease within the VA system and their relationship with downstream patterns of end-of-life care;2) to conduct a qualitative study among Veterans aged 70 years and older with advanced kidney disease, their family members and providers at 4 different VA medical centers to elicit their perspectives about the optimal approach toward ACP in this population;3) based on the results of these formative study aims, we will adapt a patient-centered model of facilitated ACP to older veterans with advanced kidney disease. We will conduct a pilot trial at the VA Puget Sound Healthcare System to evaluate the impact of the intervention on readiness to engage in ACP. Pilot data will be used to support the feasibility of a larger randomized trial in Veterans with advanced kidney disease to determine whether the intervention leads to greater alignment between patient preferences and care received at the end of life.
Elderly patients with advanced kidney disease often experience a dramatic escalation of care toward the end of life. Although most of these patients would prefer to die at home, most will die in the hospital and during the last month of life more than half will be admitted to an intensive care unit and almost one third will receive an invasive procedures intended to prolong life. We propose to evaluate contemporary patterns of advance care planning and outcomes in older Veterans with advanced kidney disease and to elicit the perspectives of patients, their family members and providers related to advance care planning. Based on this information, we will adapt a patient-centered model of advance care planning to meet the needs of older Veterans with advanced kidney disease. The work proposed here will provide a foundation for a larger multi-center trial to test the effectiveness of the intervention in aligning end-of-life care with patient preferences and values in this population.