Rates of engagement in advance care planning (ACP) are low among patients with advanced kidney disease. Planning for serious illness may be especially important in this population as many go on to receive intensive and costly patterns of care toward the end-of-life that may be misaligned with their goals and values.
1.To describe patterns of ACP, end-of-life care and quality of end-of-life care for Veterans with advanced kidney disease.
2.To elicit the perspectives of Veterans with advanced kidney disease, their family members and friends and multidisciplinary providers who care for this population on barriers and facilitators of ACP.
3.To develop and pilot test an intervention to support ACP in Veterans with advanced kidney disease.
Aim 1: Using the VA Managerial Cost Accounting and and Vital Status files, we have assembled a cohort of all 130,374 Veterans with at least two estimated glomerular filtration rate measurements <30 ml/min/1.73 m2 within the VA between fiscal years (FY) 2000-2014. The dataset has been populated with information on baseline patient demographic and clinical characteristics and patterns of health care utilization during the last year of life has been linked to the United States Renal Data System (a national renal registry for end-stage renal disease) and CMS claims through VIReC. Among a random sample of 1,452 of these patients, we have conducted a detailed medical record review to define the frequency, circumstances and content of advance directive completion. Among the subset of 9,871 cohort members we have obtained information on responses to the Bereaved Family Survey (BFS) that is routinely administered to family members of patients who die in a VA facility by the PROMISE Center at the Philadelphia VA.
Aim 2: We have conducted semi-structured interviews with 27 patients with advanced kidney disease, 17 of their family members and/or close friends and 26 multidisciplinary providers who care for this population. Interviews were recorded, transcribed and coded by members of the study team to identify emergent themes using grounded theory methods.
Aim 3: No pilot trial was performed. We will be working with the VA Life Sustaining Treatment Initiative (LSTI) team at our site to inform implementation within the Nephrology section.
Aim 1: Based on an analysis of 5,350 of 9,871 potentially eligible cohort members whose family members completed the BFS survey, 55.7% were not treated with dialysis, 10.3% received acute dialysis only, and 31.7% received maintenance dialysis. Among those treated with maintenance dialysis, 23.7% discontinued this treatment before death. Compared to patients not treated with dialysis, those who had received acute and maintenance dialysis were more likely to receive intensive procedures and to die in the ICU and were less likely to receive palliative care, respectively, compared to patients not treated with dialysis. Family-rated quality of end-of-life care was similar among all three treatment groups for most BFS items. Patients who had discontinued dialysis treatment were less likely to have received intensive procedures, much more likely to have received palliative care and less likely to die in the ICU than patients who continued dialysis treatment. Family members of patients that discontinued dialysis before death were consistently more likely to express favorable ratings of end-of-life care (OR= 1.37-1.8, p<0.05 for all BFS items) than those who continued.
Interviews with patients: We identified three emergent themes from interviews with patients with advanced kidney disease: (1) emotional impact of interactions with individual providers; (2) emotional impact of encounters with the health care system (3) emotional impact of meaning-making.
Interviews with providers: We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings, providers and over time; (2) lack of a shared understanding and vision of ACP and how it should relate to other aspects of care, such as dialysis decision-making; (3) unclear locus of responsibility and authority for ACP; and (4) lack of active collaboration and communication around ACP among different providers caring for the same patients.
Interviews with family members and friends: We identified the following themes: (1) roles of patients' family members and friends in care and planning were fluid over the course of the patient's illness; (2) their involvement in patients' care was strongly shaped by health care system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system.
Aim 3: We did not perform a pilot test of our results. The VA-wide LSTI is currently being rolled out and we will be working with the Nephrology LSTI Champion at our site, along with other members of the nephrology section to use our results to inform how this is rolled out within our section.
Our work has thus far provided the following insights that can guide future efforts to improve care planning for Veterans with advanced kidney disease.
1.Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around ACP among providers. Failure to integrate dialysis decision-making with ACP likely represents a missed opportunity to enhance both processes for members of this population.
2.A deeper appreciation of patients' emotional experiences may offer important opportunities to improve care.
3.There may be value of systematically offering opportunities for engagement of patients' family members and/or close friends throughout the course of illness.
4.More work is needed to understand the role of dialysis discontinuation in end-of-life care for this population.
5. Our work will inform the rollout of the LSTI within the Nephrology Section at the VA Puget Sound Healthcare system
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