Expressed Values of Patients Receiving Dialysis May Not Match End-of-Life Care

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Patients receiving dialysis who say they value, comfort-based care often end up with advance care planning and end-of-life care that focuses on prolongation of life, reports a study in JAMA Internal Medicine.

The survey study included patients receiving maintenance dialysis at centers in the Seattle and Nashville metropolitan areas between 2015 and 2018. Participants responded to a question about the value they would place on comfort-based care and pain relief compared with longevity-focused care, even if it entailed more pain and discomfort if they were to become seriously ill. These expressed values were compared with patient-reported engagement in advance care planning and end-of-life care received through 2020, based on linked kidney registry and Medicare claims data.

The analysis included 933 respondents (mean age, 63 years; 56% male; and 27% Black) with linked registry data. Nearly half of participants (48.4%) said they would value comfort-focused care, whereas 19.2% valued longevity-based care. The remaining 28.1% were unsure about which intensity of care they would value. Those who valued comfort-based care were more likely to say they had not completed an advance directive: estimated probability, 47.5%, compared with 28.1% of those who valued longevity-focused care or were unsure.

Patients who valued comfort-based care were also more likely to report that they had not had discussions about stopping dialysis (estimated probability, 33.3% versus 21.9%) or hospice (28.6% versus 18.2%). Most patients indicated they would want to receive cardiopulmonary resuscitation: estimated probability, 78.0% in those who valued the comfort-based care group and 93.9% in those who valued longevity or were unsure. For mechanical ventilation, estimated probabilities were 52.0% and 77.9%, respectively.

Among patients who died during follow-up, expected probabilities of intensive procedures during the last month of life were 23.5% for those who valued comfort-based care and 26.1% for those who valued longevity-focused care or were unsure. The findings were similar for dialysis discontinuation: 38.3% versus 30.2% and hospice enrollment: 32.2% versus 23.3%, respectively.

The study adds new evidence of a “disconnect” between expressed values for care versus actual care received by patients receiving hemodialysis. Although patients are more likely to express a value for comfort-based care, advance care planning and end-of-life care often reflect a focus on longevity. “These findings suggest important opportunities to improve the quality of care for patients receiving dialysis,” the researchers conclude [Wong SPY, et al. Value placed on comfort vs life prolongation among patients treated with maintenance dialysis. JAMA Intern Med 2023; 183:462–469; doi: 10.1001/jamainternmed.2023.0265].