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- W3036692803 abstract "•Discuss dialysis patients' perspectives on provider communication about options for renal replacement therapy.•Describe the barriers to advance care planning conversations in end stage renal disease. People with end stage renal disease (ESRD) experience higher treatment intensity, more hospitalizations and lower rates of advance care planning near the end of life than people with other serious illnesses. Comprehensive care of people with ESRD includes advance care planning conversations that address goals of care well beyond choices between specific options for renal replacement therapy. The objective of this study was to explore the nature of advance care planning and how provider communication influences a sense of coherence about illness and treatment in a sample of dialysis patients. In-depth chairside interviews involving the collection of both qualitative and quantitative data were conducted with 35 participants while they were on dialysis. Open-ended questions focused on the history of illness, development of understanding about the disease and its impact on their lives, goals of care, and what gives life meaning. Categorical questions focused on the timing and quality of provider communication about healthcare decisions using the QEOLC-10, if they had a healthcare proxy, and what the person knew about their wishes. Participants Mage=55.8(SD=17); 77% were African American, 20% White and 3% Latinx; 57% were female. The length of time on dialysis ranged from 4 months to 24 years. A majority (89%) had a healthcare proxy and 77% said the person would know their wishes if unable to speak for themselves. The length of time it took to fully comprehend the complexity of being a dialysis patient ranged from 6 months to 3 years. Four themes were illuminated from the analysis of the narrative data: Differential Illness Trajectories (unexpected kidney failure, long-term diabetes, hypertension, transplant failure); Meaning Making is Coping; Provider Communication; and Living with (not Dying on) Dialysis. Comprehension of the realities of dialysis is complex and focuses on life-affirming choices." @default.
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- W3036692803 date "2020-07-01" @default.
- W3036692803 modified "2023-09-29" @default.
- W3036692803 title "Living with Versus Dying from End Stage Renal Disease: Dialysis Patients' Experiences with Advance Care Planning (RP321)" @default.
- W3036692803 doi "https://doi.org/10.1016/j.jpainsymman.2020.04.066" @default.
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